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dotty

New member Dotty - Relatives watching recovery

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Hi, 

 

wondering if anyone can just help settle our worries a little bit. I know every case is different would be great to hear what other people went through watching a loved one during recovery. 

 

2 weeks ago my Dad (aged 51) suffered a very large SAH. The last 2 weeks have been such a rollercoaster from the point where we were sat in room with a doctor telling us there was nothing they could do as he was not responding, to the doctor coming back in saying scrap that, he has just started responding. 

 

He has been in Neuro critical care and the staff have been absolutely amazing. He recognises us all, he can eat and swallow, his eye sight seems ok as he can read big signs on the ward etc. 

 

2 weeks on he is extremely confused and just rambles on his own little world about random dates. Each day he thinks he is a different country in a different situation. Is this confusion all normal? If we talk directly at him and ask him direct questions his memory is there and he knows the answers. But we just want the normal dad back, not the confused one. 

 

Is the confusion and being in your own little world normal and if so how long did it last for other people? 

 

Also the surgeons have said they have looked at all jis scans and stuff and stuff and they have decided they do not want to intervene or operate as the risks are too high. They have just said they will continue to monitor and it will take months and months for recovery. Is it normal for people to be untreated? Especially when it's a large bleed?

 

Thank you, just looking for some re-assurance that the confused patient is normal and all part of recovery. 

 

Thanks 

Dotty

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Hi Dotty

 

A very warm welcome to BTG :)

Glad you found us.

 

So sorry to hear about your Dad, such a stressful worrying emotional time for you all.

Two weeks is so very early in your Dad's recovery, his brain will be working overtime trying to mend and recover from a huge trauma, plus doing the normal everyday things we take for granted. Really fantastic news he recognises you all, is eating, swallowing and reading signs.

 

The confusion often comes from extreme fatigue, have you noticed your Dad sleeping a lot. This is normal as he will need lots of rest and sleep to help with his recovery, also lots of water. The surgeons are closely monitoring your Dad, and sometimes recovery does take months & months, there is no time limit, everyone's recovery is different.  Although he is confused and seems in his own little world , he is responding to your questions and his memory is there, which is a huge positive :)

 

Wishing your Dad well with his recovery and look forward to hearing how you are all doing.

You will find lots of helpful information on the Forum. Please feel free to ask any questions, we cant give medical advice, but can share our experiences. 

 

Take care & remember to look after yourself.

Tina xx

 

 

 

 

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Hi Dotty,

Welcome to BTG, so sorry to hear about your dad, you have come to the right place for help, support and advice,

 

As Tina said, 2 weeks is still very early in your dad`s recovery, you are bound to be very worried and that is normal,

it all takes time and the fact that he is talking to you and able to answer your questions is really good.

 

You will find that he needs plenty of rest, his body and his brain have suffered trauma and they need lots of time to recover,

 

Try not to worry as the doctors looking after your dad will be taking really good care of him,

 

Have a look around this forum, you will find a lot of useful information here that will be helpful in the weeks and months to come,

 

Wishing your dad well as he starts his recovery journey and your family as you go along the recovery road with him.

 

Take Care

Love

Michelle xx

 

,

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Hi Dotty

 

warm welcome so glad that you found us.

 

I think its all quite normal everything that you have mentioned its all a huge rollercoaster ride...

 

the two replies before mine say it all so take care of yourself and wishing your Dad well...

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Hi Dotty,

 

I thought I lived in my old house and my short term memory is arghhh !! 

 

My house looked different all they had done was change the fireplace, 

 

Give him time but also keep an eye open for him, make sure he has no stress and sing him songs he liked xx Happy ones.

 

Always make sure( if he has a catheter in) that it doesn't get too full.  All that others have put xx  Water etc xx

 

Good luck to you and Dad xxxxx  Slow but sure is the procedure xx 

 

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Hi Dotty

Welcome to btg, this is a good places to come for support

There is nothing i can say that as not already been said, but i do wish your dad good luck in his recovery xx

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Hi Dotty,

 

Welcome to BTG.  As the others have said this is so very, very early in recovery terms.  Many of us were in the condition you describe and yes, it is very worrying not see the 'old Dad' in there when you go to see him.  However, he is still in there, it's just his brain is now starting to re-wire itself having suffered the indignity of a bleed.  It is now starting to repair itself.  What you have is a spilled box of Milk Tray where all the chocolates have fallen out of the tray into the carrier bag.  All the parts are still there but it will just take time to get all the chocolates back into their rightful places in the tray.

 

He needs to recover at his own pace, not the one you might want him to.  What he needs from you is to be there for him, to support him when he needs it, and to give him the space and time to recover.  It can be a slow process and everyone goes at different rates.

 

He will, in time, need to make some changes to his life and routine.  The issue is that change has been thrust upon you abruptly instead of gradually as it does when you age.  You need to be flexible in your approach now to  deal with those changes and re-build a quality lifestyle.  It can be done, but having the right attitude to it from the start is key to its eventual success.

 

We are here to offer our help and support as much as we are able. let us know how you get on and keep in touch.

 

I wish you all well.

 

Macca

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Hi Dotty,

 

hope Dad is keeping stable and the hospital team are looking after him. Hope you and family are looking after yourselves too as its a real shock for everyone involved.

 

We can't give you medical advice but when you say they haven't operated, not every SAH is operated on. It maybe be worth asking whether he had a visible aneurysm burst that they can see on the scans or if the source of the bleed Is not known. That way you know the facts. 

 

To explain that, we have lots of members here who have had non-aneurysmal bleeds , NaSAH, which basically means no cause was found for their bleed but it can still be a severe grade bleed across the surface of the brain. People who have NaSAH don't usually have any interventions to 'fix' the bleed orgin. . Those that have SAH , also a bleed across the dura of the brain , usually have an aneurysm visble on scans which is presumed to be the origin and then we go on to have clipping or coiling or stenting.  

 

Some of us also developed complications from our bleed, (these can more often be associated with higher grade bleeds but anyone can experience them, ) including hydrocephalus, ventriculitus, and these may require other short term interventions or surgery to place drains or sometimes long term solutions like VP shunts.

 

There's some better explanation of medical terms related to SAH in the glossary posts on the forum pages. 

 

http://web.behindthegray.net/index.php?/articles.html/sah-info/

 

The main thing I suggest is to talk to your hospital about Dad, what is the plan, what can you do. how long will he stay? Get a good relationship with his team.  he is needing you to be his advocate right now so try to find out as much as you can and then also give him time to begin his recovery as well. He will struggle to concentrate and take in any new facts, he will get confused in his surroundings and with events and this will change each day.

 

My family were were told to expect the worst too and it was touch and go but the reality for me is I don't recall any memories from my first week and for a long time after that it was like Groundhog Day for me and then I could do a fraction of what I could do previously for a long time afterwards. . 

 

Reassure him, be gentle with him and each other and offer plenty of encouragement. This is very early days for Dad but the fact he has a good swallow, has recollection of you all is reason to hope his recovery will continue to show a good rate of progress. Confusion is not unusual but if you think he is getting worse or the confusion is increasing then that is worth highlighting.

 

take care Dotty and Dad. Good luck

 

 

 

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Thank you so much everyone, the re-assurance from all your messages has been fantastic. 

 

Dad is continuing to stay stable and has started getting some very slow movement back on his left side of body as that had stopped moving last week. 

 

His confusion is still very very much there, but his topics of conversations are starting to become more relevant, so about stuff we have just spoken about, but he mixes like 3 topics together. But it's better than last week where he was just laying there mumbling random dates and people and just random stuff. He was also swearing and shouting out stiffness last week, which was very un-characteristic of dad ... but that has gone now, so happier with that. 

 

Thanks again though, it's been great hearing from people and reading through some different threads on here 

 

Dotty 

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Welcome Dotty and sorry to hear about your Dad, it must be very scary for all the family particularly as he is relatively young.  I had anuerysm which was coiled and much lighter bleed.   As Daffodil has so wonderfully explained there are bleeds where they are often not sure of origin so treatment often cannot take place.  Even when they are anuerysms it is dependent on where it is on whether it can be coiled or clipped.  I am sure if at this stage it was an option they would do.  

 

With relation to confusion if you think of your brain having pathways to pass messages, recall memories, process information and help everything function a bleed can play havoc with those pathways so what comes out is often mixed up, hopefully as they recover or the brain compensate by finding new routes there will be less confusion. 

 

I am sure having your support will aid that recovery, it maybe slow and result in changes but I am sure each day will bring some element of healing.  There maybe hiccups on this journey, there definitely was in mine as you do have an emotional rollercoaster with good and bad days.  Make sure you also take care as it is a hard journey for families too.

 

Wishing your dad all the best.

 

Take care

 

Sharon x

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