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Tori - 5 weeks is still very early days?


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Question-did any of you suffer with sight problems when first recovering from a grade 4/5 bleed?  Did it improve?  I think this is quite apparent with my Mum at the minute but she is doing so well other wise! I can't wait for rehab now! 

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I ended up with Tersons Syndrome after my SAH. The blood had forced its way down my left optic nerve and when the blood cleared it left debris in the back of my eye. I was almost blind in that eye, it was like looking through water only worse.

The eye was operated on and the debris cleared giving me back my vision.

It may well be worth asking about that syndrome.

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  • 3 weeks later...

Hi All

i just thought that I would update.  It is now 3 months since my Mum's grade 5 bleed.  She is still sat in the neuro ward waiting for a bed to become available in the rehab ward next door.  It is now 3+ weeks since she was referred.  She needs therapy now as she is at the stage where she needs to be pushed.  

 

She is having a peg this week so her feeding tube from her nose can be removed.  She is eating puréed food orally but not enough for her to not have a peg.  She also says that the puréed meals are disgusting.  I don't blame her for not wanting to eat them to be honest.  She eats for me as I can be a bit more forceful but the nurses have to be so careful and PC that they cannot feed her unless she willingly just opens her mouth.  I took some lovely puréed baby food in today by Ella's kitchen and asked the nurses to try her wth that (I couldn't stay for feeding tonight).

 

Anyway my great Auntie went tonight and they hadn't been touched.  I'm getting pretty frustrated!! I am trying to do everything for my Mum not to have the peg but I just can't be there every minute of every day and I just wish the nurses could spend a bit more time and persuade her a little more (with food that she actually wants to eat!).

 

Otherwise all limbs are moving now but she is bed bound again due to a seriously upset stomach that she has had for 3 weeks.  She has sores now from it. She had a stomach CT last night and they think it's just colitis.  She talks about allsorts of things-some makes sense some does not.  I am just keeping everything crossed for a rehab bed soon.  

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Really hope you mum gets a rehab bed soon . Maybe see if you can chat to the matron if they have one and have a check in on mum's care and set expectations. If your worried then you could always involve the patient liaison but often a chat and conversation is the best starting point. 

 

Tell her her btg is rooting for her 

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Hi all

Mum went to rehab last Friday.  She still has a very upset stomach so it's holding them back a bit but they are assessing her at the minute.  She is in The Haywood In Stoke?  

 

She he is continuing to make more sense each time I see her but still forgets a lot.  She put her own glasses on when I was there the other day.  I'm hoping that there will be lots of improvements now :-) x

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Hi Tori

 

I'm sorry I seemed to have missed a lot of your postings. please don't get upset about the peg its there to maintain mums weight and it will be removed when mum gains weight and maintains it as it is better in the tummy than the nose so mum will be a lot happier.

 

My Lin was in the old n/staffs and yes they were brilliant to her although sometimes the nurses seem to be over stretched hence the food was still on the table. are they thinking of mum going into rehab elsewhere after they deem her fit enough?  if you see Simon Shaw give him my regards  a nice chap, wishing you and mum well take care and try and take time for yourself please  xx Paul

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  • 3 weeks later...

Hi there

i just thought I would give you an update and I would like some advice if possible?

Mum is just into her 4th week in rehab now.  She sits out most days and participates in music group (singing etc).  She is on a solids diet and feeds herself with her left hand.  I think she is making excellent progress!!  

 

The occupatinal therapists are very challenged with her though as she has multipul cognitive disfunctions.  She is still very in unaware of time, location and self...if you asked her what she has done that day she either says "I can't remember" or that she has been cleaning the house or mucking the horses out.  And struggles with simple commands sometimes or forgets that the nurses have told her not to do something (pull at a tube etc).  Did any of you tell nurses and loved ones that you were somewhere other than hospital etc etc?  

 

She now knows me and calls me by my name now and knows that I'm her daughter.  As with my brother, my Dad (her ex) and our dog's names.  And makes sense sometimes but then gets lots and comes out with completely the wrong words.  Can this improve?? 

 

We have taken the the dog to see her and she patted and stroked him and knew who he was.  

 

Thanks all.

 

Tori

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Tori. I think the majority of us, in the very early days, had confusion and talked nonsense. I knew I was in hospital but thought I was in the one where I worked in my late teens according to my family.

I even accused them of trying to poison me.

Short term memory problems are also a common result of a SAH. In the main a modicum of normality does return over time, maybe not to the same level as pre SAH. I am 13 years on and still come out with the wrong words or I lose words and get very frustrated when I know what I want to say but cannot recall the correct one.

 

All in all it sounds as if your mum is making progress, slow but sure. Nothing in the recovery is fast, it can take goodness knows how long.

 

 

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Thank you so much for your reply.  We are 4 months in now but it's not been plain sailing and has had lots of set backs.  Ventriculitis and colitis have set her rehab back so it's more like 3 months really....so all in all not a long time at all.  I think she is doing really well-I think the therapists want more but she has had a grade 5 rupture and in my eyes is a miricle!

 

They think she has right hand neglect-she struggles with focus on that side...she goes to reach something with her right hand and misses it etc.  Again something that the OTs are working on.  I am just constantly worried that they will give up on her.  She is a lot better with me because she knows me...but they do like to do their therapy,meal times etc without us being there.  Her personality is also back and she is very funny!! Talks about alcohol a lot haha 

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  • 1 month later...

Hi All

i hope that you still maybe interested in my updates so here it goes...

 

Mum is now walking down the corridor with a zimmer in her physio sessions and doing really well with it!! She is also transferring to the loo and bed with a spinner thing so she stands etc...very impressed!! The week before all this , the ward consultant told me that she doubted very much that my Mum would walk again... 

 

now she is getting more aware, she is getting very irritated and restless.  She says she is stupid and cant understand why she can’t do the things she used to.  She gets really upset...I’m presuming that this is a pretty common phase? She is still struggling with orientation...knowing what day/ month/ year it is but she has prompts in her room that she can read.  Her reading is getting better but we don’t think she is understanding what she is reading at the minute...

 

5 months in now and I cannot believe they difference over the last 6 weeks in rehab. 

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Hey Tori,

 

This is fabulous news of your Mum's progress.  Progress has obviously been slow, but that's to be expected after a serious brain injury.  You just have to stick with it and watch her go!  Compared to what you were describing in what seems only a few weeks ago, your Mum has come on leaps and bounds - and long may it continue!

 

So very pleased for you both - keep the faith and keep posting -- many of us are very interested in your Mum's progress.  You must be so happy after the devastation you envisaged at the start.  You are playing a massive part in her recovery and now you can see the results of your labours and your patience.  Fantastic!

 

Beautiful story and I, for one, am very happy for two beautiful people who so deserve the rewards you are now reaping.

 

Best wishes,

 

Macca

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10 hours ago, ToriC said:

She is also transferring to the loo and bed with a spinner thing so she stands 

 

Hey Tori - if memory serves its called a Torrus or Taurus frame -my hubby had to use one of those to get out of bed in into his wheelchair after his motorbike accident a couple of years ago.  They're brilliant and do make the person using them feel a little more independent.

 

Fantastic news though about your mum, like Macca said, yours is a beautiful story and you are beautiful people - soooo very  pleased to read mum's progress - in fact it's made my day already xxx

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Hello Tori - very good to hear about the progress your mum is making! You are doing very well, Well done to you.

The memory will slip in an out and there will be lot of relevant & irrelevant things said. - my husband had a dream of being in france  and in a very technologically advanced place. LOL

 

It took my husband a good 10 days to be reasonably stabilised with the memory and speak cogently.

Re: the eye vision - with the hemorrhage that my husband had, few the blood vessels behind the eye also had burst and had aberration there too.

Your mum will hopefully be referred to the in-house eye clinic, if not, please ask them to refer you to the eye hospital where they will check the eyes dye-assisted test(which will not impact kidneys) and let you know if all is well.

 

For my husband (who had glasses already) there was a significant change in eye-power and we got a new set of glasses made.

Grumpiness and annoyance is something I have faced a lot from Sandeep, because of the haemorrhage and the ischaemic stroke he had, he was not legally allowed to drive until the eye-check was complete/doctor sign-off AND the DVLA approval came through.

 

I can tell you it was the roughest phases - he was dependant on me physically, physiologically and also in terms of memory! It was not easy.

BUT it will definitely get better - listen to lots of positive stories and positive people - dont worry about cutting chords with people that darken your doorstep. 

 

You are doing very very very well - it will get better !

 

Prayers to you and your mum.

Best regards

Shobana

 

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Tori, it's wonderful that the rehab is having such an impact. Please tell mum that she is not stupid from all of us here. There have been times I expect most of us have uttered that phrase when something we could do so easily before takes so much effort now or it's hard to figure out why we just can't do it. Frustration is a constant companion at first once pain moves over but it continues to improve especially if you always keep it xploring the possibility of a situation and are prepared to adapt and accept all offers and suggestions of help.

 

I can look back and see so many 'regains' since my SAH and am fortunate that most of my physical ability is similar to before. It's not the same, there is plenty still I can't do that I did before and also that I just don't have the cognitive stamina to attempt but every , day, month year since has shown improvement.

 

Keep looking forward. Take care and thanks for the updates. People will read and take comfort from your sharing .. 

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Hi Tori... thank you for your update about your mother.

 

Well done to all of you ...... everyone`s recovery is so different.... and five months on you are obviously so encouraged at the progress she has made.

These early days are filled with so much pressure and worry when you are witnessing her at her lowest... and although 5 months is still early... we can sense the hope in your post.

 

Keep in mind Shobs` helpful comments about attending the Eye Cinic if she has not already been there.

 

Keep strong and please continue to keep in touch

 

 

Subs

 

 

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All sounds about right, using myself as a guide. I read stuff kind off, but never took it in (due to my short term memory loss) 

The more aware I was the more annoyed I was, because I thought I could do stuff, but actually couldn't, the old you says 'of course I can' the new you 'cant'

 

When I was in, never had prompts day/month/year etc and, lets face it, some days I've got to think what day is it...  Ha ha ! My husband was talking the other day about my time in hospital ,when I was asked which hospital are you in, my reply was 'well you work here you really should know' (but I found this such a daft question as I was on the inside, I didn't know where about I was, just to me and my 'new brain' it was a very stupid question.

 

Rehab, I knew, would show improvements onward and forward for you all.

 

Take care and thanks for the updates...

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