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[Dune2014]

I am a new member and new to posting on forums. My wife had a subaracnoid haemorrhage in January and is currently in a neuro rehab unit.The haemorrhage has left her wheelchair and hoist dependent however the most dificult problem that I am finding hard to manage is her confusion and her delusions. I would like some reassurance or advice as to the likelihood of the delusions continuing or could they fade as time goes on. Annie is my world and I know they upset her.

Many thanks

[jess]

I hope your wife improves soon xxx

It will all take time her brain has suffered lots of trauma xxx

These things can get better but I would seriously consider talking to her neurosurgeon as I am certain they will be able to tell you and reassure you more xxx

[Winb143]

Hi Dune,

I, like your Annie was hoisted after returning home, all I can recall  in hospital was people hurting me and my sisters singing to me.

After I had a shunt fitted (hydrocephalus) it was like someone switching a light on.  Give your wife a chance and look after yourself also as it's a long haul but once she starts to get better she will come back to you.  Keep singing and doing things with her ie sing show her pictures.

My hubby used to take me out and I couldn't hold myself up or hold my cup so he used to get me a coffee and ask for a paper cup so I could hold it myself but getting out done me good.

 

I wish you and Annie well and good luck the pair of you, never give up.  

Regards to you both

WinB143 Early Days yet x

[Super Mario]

Welcome to BTG

Sadly everyone's recovery is very different and no one can predict what will or won't happen.

We have a member on here whose family were told she would never walk amongst other things and she would be better placed in a home. Needless to say, they refused and took her home. She is now walking, not far but improving very slowly. I can't remember how old her SAH is.

As I have said, only time will tell with recovery outcomes. As she is in rehab she will be getting lots of support to help her.

Any questions you have need to be put to your wife's medical team.

Sorry I can't help anymore but other members may.

On this forum there is lots of support for survivors and their relatives so please feel free to come back to ask more questions or even to blow a fuse. In the meantime it is also important to look after yourself.

[Dune2014]

Many thanks all for your encouraging feedback. I have seen so much improvement in Annie over the months but this seems to have set us back a little. It's like we've come to a dead end. My wife is suffering with pain in her shoulder which the Consultant says is due to her shoulder dropping in the socket. As she requires hoisting even the physiotherapy and OT sessions seem to have become less and less. This is not a rant but its just nice to know that people who have suffered the same are out there.

Again thank you so much.

[Super Mario]

I suggest that you may have to be a little forceful regarding your wife's rehab care. The fact that she needs hoisting should not be a reason to discontinue treatment that may help her future recovery.

As for recovery, progression is in baby steps with many a set back along the way.

[momo]

Hi Dune, I suffered from delusions in my first year of recovery.  I don't remember much of that first year to be honest but I do remember some of the delusions I had and one in particular that I hung on to for a long time.

 

 It was all very scary because I was right and everyone else was wrong.  I remember one psychologist telling me in rehab that what I was saying was impossible , I had to believe him, but I was so convinced I was right that I thought he wasn't telling me the truth.  I was in a very bad way mentally for about 1 year but I improved gradually and the delusions stopped.  

 

I would get help with this from a psychologist in rehab (you may already have done this) I was also prescribed medication which he convinced me to take (which I did and that was a feat in itself as I used to refuse medication!) and it helped.

 

Always keep in mind that the brain has this amazing ability to recover it all takes time.  

 

Good luck and hope you see improvements soon.

[Daffodil]

Hi and welcome. I, going to echo Penny and say don't let others sit back and drop off therapy when she needs it most, maybe look to find ways she can continue to do things, can they do something to help for the dropped shoulder, I think there's something called saebo flex I have heard of used with stroke patients? May have that wrong...someone in rehab will know something.

On delusions, have they got worse? Increased state of confusion or has it been pretty constant, if you think things are worsening in terms of her mental state Discuss with her medical team to make sure they have ruled out any underlying reasons that it is happening because there can be like Win experienced.

Also a huge well done for braving the world of forums and finding us as that is hard if you have never done it as it is to read other peoples stories but hopefully you will find some hope and comfort as well.

Hope you have lots of support and tell your wife that things will slowly change every day, always hope.

[Dune2014]

My wife had her SAH in January and has since had 4 lots of surgery. The bleed was repaired successfully however she then had encephalitis and a drain was fitted externally. As she became drain dependent a shunt was put in place. It then became clear that the shunt was in the wrong place and the procedure was repeted. Annie started to recover well and the signs were positive. Her short term memory was and still is very poor but long term was good. It became evident that my wife had no voluntary use of her legs however, involuntarily when she stretches, coughs or is asleep she moves them.

As for the delusions they have been there since she started to talk, however they seem to get worse when she is hoisted, put in to bed or when she gets anxious (when she needs to go to the loo) I remain very positive and I try to be firm and to the point with the professional team around Annie but at times my concerns fall on stoney ground.

Recently to treat my wife's shoulder she had a lignocaine patch and hot pad treatment. This led to her sustaining a nasty burn, which was made worse when they removed the patch.

As for now we are currently waiting for an adapted house.

Thank you all for you wishes, advice and information, I will continue to post as Annies journey may help others.

[Super Mario]

Ouch, the burn stinks of neglect. There must be something that can be done for a dropped shoulder, a splint or some sort of support.

I suggest you investigate this and put your findings to the doctors. In this day and age of cutbacks folk are tending to be written off rather than spend money. If you do find an appliance that will help Annie's shoulder you may have to be forceful.

The fact that anxiety and delusions occur when she is being hoisted makes me wonder if she has been hurt by this procedure whilst she couldn't talk and therefore couldn't complain of pain. May be worth investigating that as well if you can.

If you are not happy with her treatment,(some rehab hospitals are better than others,) and what you are saying is falling on deaf ears I would seriously consider contacting PALS for the hospital she is in. They can take complaints forward or just have words in the correct places. They are always taken notice of.

http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68&SubCategoryID=153

[Winb143]

Dune,

I used to sit in hospital bed and think I was in a café with my daughter and I would say "Get my bag, my treat".

I never knew about this, but we laugh about it now.

PT's made me cry and my daughter said she had to be with me or else I'd be awkward.  I felt like they were being bullies.  Just me I guess !! 

Try and get Annie to squeeze your hand and talk all the time.  I really am pushing for Annie as I read your post and see me in your words. (understand?)  mind, your wife had more ops than me.  I just had the SAH op and a shunt fitted.

I still repeat myself but that's nothing new for me.   I slept a lot also.

Keep the faith and Good Luck both of you.

Winb143 Sing and laugh when poss xx

[paul99]

hi dune

 welcome to btg do you know which hoist they are using as it maybe unsuitable for her and is causing pain

there is an oxford hoist and an arjo hoist  the oxford can be painful as it maybe that your wife cannot do what is required whereas the arjo lifts completely and safely which is what my partner needs there are different sizes so who ever needs it will not slip through when they lift her.

 

   you need to make sure that when your wife is discharged that a care package is in place including phyiso  and o/t is included and do not let them discharge her without that help in place

 

  I would ask the dr treating your wife is the shunt working properly as I know that confusion could happen because the shunt may not be working as well as it should

 

   but it should be remembered that because of type of injury it takes time for things to settle

 

I've been dealing with my partner for over five years this year and I have learnt if you don't ask you don't get

 

if I can help please send a pm good luck and best wishes to the family     

[Dune2014]

I would like to give big thanks to penny and the group who replied to my cry for help. Today fuelled by the positive attitude of the responses I had, I set out on my daily visiting routine at the rehab. Today Annie was quiet and a little withdrawn, the delusions were very suppressed as was her confusion. Penny I took this opportunity to be firm in discussing Annie with the lead Nurse and the Neuro Psychologist. As a result they are bringing in a Nurse Specialist who deals with burns, as they feel the burn is deeper than first thought. They have stepped up the physio, put in place a new toileting regime and checking for a UTI.

As for Annie she fell asleep quite early which gave me the opportunity to cut short my visiting time.

Again thanks penny and all for your response.

Chris x

[Super Mario]

Chris, pleased to hear that you have been able to incite some changes for Annie. It is not only me but all the members on here who will do their best to support you both. No thanks are needed.

Remember we are here for you whenever or whatever. The forum will support you both to the best of its ability.

[Daffodil]

Chris, really great to hear that your talk with staff has brought so some positive change. I hope that burn gets sorted quickly.

The teams will often label a patient and 'accept' the status quo of how they perceive the condition and future prospects will be. My experiences tell me that you need to be firm and clear with what you expect with standards of treatment for Annie and ask anyone else visiting to help make sure these are upheld. That's not you being difficult that's you demanding the best level of care and attention to help her make the best recovery she can.

My Mother in law worked in hospitals all her life in a senior position and became my biggest advocate, (she still takes me to hospital appointments )but she and my mum and husband had occasions to stand toe to toe with staff caring for me when they saw them doing something which caused me pain or worry just because they were rushing to do it quickly rather than properly. I am sure we all experienced that but the difference is made by having an advocate who says ' no, not good enough, let's try something better' . Well done for speaking up.

On the hydrocephalus and shunt, I had mine placed four months after bleed and it took four adjustments to the valve before I had reached a setting which suited me , until then all I wanted to do was lie down as when.i stood up, well it was horrid, it was set too low for me and drained too often, it's a bit like a toilet overflow set wrong it will constantly drip so then I didn't have enough fluid to bathe my poorly brain. Factory setting doesn't work for everyone, just saying.

Worth asking does her shunt have an adjustable setting and has the valve been checked recently to ensure it's draining? The thing is if Annie is lying most of the time then when she sits up it will the shunt will drain most likely every time and as she is healing that will make her feel awful and associate it with that. I had to sleep propped up with pillows for months afterwards and even now I never lie completely flat for long periods of time so I would maybe suggest trying to raise her head a little more in the day. Also it has to be a slow sit up from lying so if they hoist her quickly from lying that's probably not ideal. As Paul says they should check it is draining properly as I know my confusion and tiredness increased when I was getting pressure build up. Maybe keep a diary of what increases her anxiety and what reduces it and with staff you can figure out what suits her. Definitely worth asking to see and talk to a hydrocephalus nurse specialist as well.

Good luck.

[Winb143]

Hi Dune,

 

Glad to see you in better spirits,  just keep an eye on your wife if she seems down or sad question carers/nurses.

I do not want to scare you but I had UTI for ages and it made me hallucinate. 

 

My Daughter used to ask about me and she was made to feel a pain but she was only caring for me.   In the end my hubby and daughter looked after  me in shifts.  One carer said Jeezus when my daughter said "my Mums bag needs emptying".      Take no nonsense off them Dune.

 

I also forgot that my Dad was dead and used to say "Tell Dad I'll be up to see him when better" then it clicked that my Dad passed in 1999 weird!! 

 

Anyway may you and Annie be well xx

 

Good luck to you both chin up

WinB143 xx

[Benjamin Newbery]

Hello Dune! I see that you're from Swansea too. Welcome to BTG. I am glad that you're feeling a bit better and I hope Annie feels better soon and like Win says take no nonsense off them. 

[Dune2014]

Hi Welshben31, yes Swansea born and raised, all we need naw is for Adapt to find us a place to live. They are next on the hit list.

[DawnS]

Hi Dune, welcome to BTG!

 

I had delusions to begin with. These were strongest while I was in hospital (3 weeks) and gradually lessened as I got used to being at home. The delusions were very detailed and I was completely convinced that they were real as a result, how could they not be? After settling into being at home, I was very confused for a long time. The flat looked different somehow, I had no idea what day, month or year it was. I also had serious issues with time distortions. 10 minutes stretched on and on and seemed like hours. I would often say things that were complete lies, I didn't mean to, it's just that on opening my mouth to speak something entirely invented would come out.

 

It's very good to hear that being firm with the staff has brought positive results. It's easy to assume that the professionals know best, but you know your wife better than anyone. I suffered from vasospasm days after my op. My partner had to insist to the staff on duty that I really was not myself at all and that something was badly wrong. His insistence resulted in me being readmitted to neuro ITU for immediate treatment. As vasospasm can result in brain damage, I am very lucky that my partner insisted!

 

Best wishes to you and your wife x

[Louise]

Hi Dune

 

Warm welcome glad you found us (sorry late on this)

 

I too was in rehab for a while, guess maybe I was too, but they lessoned as well.  Both my short term & long term memories are poor but you learn to cope I've learnt stratagies for this that helps.

 

Take care and find time for Yourself..