Please help: Dad not speaking after operation

[Guest ElaineW]

Hi Joanne

I know exactly what you are going through and my heart goes out to you. My mum (also aged 75) had her SAH in May of this year which was also coiled. She was in hospital 7 weeks and remembers very little about her hospital stay. The first few weeks were very difficult to cope with - I described it as a rollercoaster. She was in intensive care on a ventilator for 2 weeks (also having picked up pneumonia) and had a tracheostomy for 4 weeks so was unable to speak. I used to try writing things down and tried to get mum to do the same although this was obviously difficult- I also made an alphabetical chart for mum to point to the letters to help with communication. It is very early days for your dad and from my experience you will have lots of ups and downs from day to day so try not to get to despondent if he has a day that is not so good as the day before. My mum was pretty much unconscious or either heavily sedated for the first 2 weeks (they may well have you dad on some sedation - might be worth checking) so I had very little response during this time. My advice is to keep talking to him even if his eyes are closed - I am sure he knows you and that you are there. I can only re-itereate that everybody's progress is somewhat different but always hang on to your hope and never give up (though I know the sheer nightmare you are going through at the moment). My mum is still terribly tired over three months on now and I know it will be a long road ahead. Hold your dads's hand, kiss his cheek, read him the daily paper and just be there for him. At times things mayl feel hopeless but it will get better.

Elaine xx

[Guest wilko74]

Hello Elaine and everybody else (again!)

It's strange how much strength comes from just being at the hospital, and I should have noted that it is now the plan to transfer my Dad back to one which is close to us (meaning we could go in on a daily basis, which would be just wonderful). As you likely appreciate, he was only transferred far away because of the specialist care and need for an operation, but it seems we've now moved somewhat from the medical to the therapy and post-operative care.

I did notice today that when we really did speak to Dad consistently - trying to somewhat rev him up (not in a cruel or nagging way, I hasten to add!) - we saw a sudden difference, like slight flashes of recognition. We then saw a similar change in the sense he later became tired and even seemed to try to denote he had a headache by moving his arm towards his forehead (before the collapse he had a definite habit of holding his left hand to his head to denote a headache).

It's a good idea to take photographs in, we will try to do this. He's also very interested in news and politics and loves the newspaper so we'll do this too. Thank you for the tips as we're completely open to any ideas.

I do hope he doesn't suffer any setback by the fact we can't go to see him tomorrow but this really is due to the distance involved (and I'm also trying to look after the health both of myself and my Mum, who is 72.....I know for sure that Dad would want me to do this as when he was in hospital on a previous occasion he essentially ordered me not to let Mum or myself be travelling in to see him on a daily basis).

As several people have wisely said on here already - we have to keep strong to look after Dad.

Regarding the non-speaking situation: Dad definitely looked as if he was trying to move his lips at several point today - at one point making a bit of a grunting noise from the back of his throat - but it was as if he couldn't get the word/s out. I appreciate we can't (and I should say we won't) rush this aspect. I swear though - if I heard him say just one word I would be the happiest girl in the world.

On a lighter note: I'd better not say 'thank you' again for listening as by now you're probably sick of hearing that from me!

Take care everyone and keep strong.

Joanne

[Karen]

That's great news Joanne! Your Dad will probably also feel happier that he's moving closer to home .....it's kind of like another step in the right direction.....which eventually is home....I was ecstatic when I was transferred......it perked me up no end!

[Louise]

That is good new Joanne.....

On the photo's front why not stick a few different one's onto a large peice of paper or carboard a varied selection make sure your Dad's in them with yourself & Mum and anyone else that's visiting.....

Take care

Louise.xx

[Guest wilko74]

Can I ask a question of you all please? We've just had a phone call from the hospital telling us that they've taken my Dad back into theatre to put the drainage system back into his head (is this what's called a 'shunt' or is that separate?). Does this often happen and am I right in thinking that my Dad may have been suffering a little more pressure because the drain had been removed (possibly causing his apparent inability to speak?).

Any information would be beyond appreciated at this time.

Thank you again.

Joanne

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[donna79]

I had a drain when i was in hospital and was told i had this because when yhey did the operation i had alot of fluid there x

They clamped it once to see how i got on ( shut it off from working ) but about 2 hours later i went all funny and couldnt feel my legs or

arms so they un clamped it......... 1 day later they tried again and everything was ok and my scar is healing nicely x x

At the time of my drain i was not aloud to move my bed ( i did and got told off )........

I'm not sure if this is what your dad is having ? ? but if so i dont mind answering any questions you have about it x x x

Hope your dad is well and loads of hugs to you and your family x x

[Guest wilko74]

Hi donna,

Thanks for your reply and for helping me to understand things a little better.

They shut off my Dad's drain earlier this week (the days have blurred into each other so I can't remember exactly when) and to be honest I didn't know they had taken it out yet, although we were told it would be removed as there's always a fear of infection if it's left in too long.

Anyway, there's no more news as yet but I did just want to say a personal thank you for your reply.

Take care of yourself,

Joanne

[Louise]

Hi there

I have a shunt but it didnt work right so the put a drain in my brain too its ok except when the weather is horrid like now.

I also had a gravity feed drain in had to lie flat Ronnie told me I stood right up & wouldnt sit down....

hope things go well sending hugs

Louise.xx

[donna79]

Your very welcome joanne x x

And Any other questions we are all here to help x

[Guest ElaineW]

i Joanne

My mum had a drainage system which was raised up and down the bed to keep level with her head (all to do with the pressure). It is not the same as a shunt. Mum's drain was in for about two weeks and then it was clamped to see if there was any change with the pressures in her head and then it was taken out. If you look on the internet (EVD) external ventricular drain it is very imformative. I hope you dad continues to make progress and glad he has been moved so you will be able to see him more often. I think of you often but try to take care of yourself and your mum too to as it is very easy to neglect yourself. Try to make sure you eat too as I often skipped meals and felt very drained.

Elaine

xxx

[Guest wilko74]

Hello again everyone.

I’m sorry I’ve been away since Thursday but it’s been a tumultuous 48 hours or so. To explain: we saw a doctor at the hospital on Friday – one of the team who’ve been treating my Dad – who, to be blunt, gave us little hope for any further recovery.

My Dad has been very sleepy since the second procedure – the drain being put back in on Thursday – but last night (Saturday) and today (Sunday) we’re told he’s started to mutter. Nothing incomprehensible but it’s being deemed a positive sign (although I’m trying to keep my hopes and expectations at rock bottom as this is a truly tortuous time, as you all know from experience).

I don’t know if muttering is significant of anything, to be honest.....any thoughts?

Thanks again for your immense help and support.

Joanne

[donna79]

Joanne any sign is good stay positive x x x x

Love and hugs to you and your family x x

[Janet]

Hi Joanne

I agree with Donna any sign has to be good. I think the brain is a mystery even too the Neuro's in the way in which it recovers and the time it takes to do so. Many people have been give slim odds of improvements and proved the Consultants wrong by recovering to a better degree than predicted.

Stay positive it is still very early days in your fathers recovery, my thoughts and best wishes are with you and your mother at this very difcult time. Take care

Janet x

[Guest ElaineW]

Hang on in there Joanne - the Doctors gave my mum a very slim chance of survival but she pulled through. Some days my mum did not even open her eyes and the next day she was totally different. Some days my hopes were raised and others felt just hopeless, its a long struggle but there is light at the end of it. I can't comment on the muttering - this was something I did not come across, all I can say is my mum seemed to change by the hour sometimes, her outllook at times was very bleak but she is home and lives alone so I think that is a miracle. Progress can be very slow and it is very hard for loved ones sat at the bedside just waiting and watching for some improvement and you get so disappointed when there is none. Here is a poem that touched my heart which was on display in my mum's ward and brought me a lot of comfort in some strange sort of way.

Never give up Hope

The clouds grow dark, despair around,

You just don't know what they have found.

Expect the worst, are words you hear,

Unexpected things you fear,

Your heart feels heay, your head is low,

What will happen you just don't know.

You trust in god to be your friend,

Because you need him to defend.

Your loved one lies there quiet and still,

No road ahead, only a hill.

A real hard climbs look like the aim,

To fix the spirit and the brain.

But time is there, to have and hold,

The unsure future will unfold,

It will take long of that I'm sure,

So take small steps they'll find the cure.

Then slowly you will see the sun,

Of which you thought would never come,

You must be strong, don't see defeat,

Just smile at them and feel the heat.

Then one day soon you'll take them home,

You'll have to watch them, they might roam,

But hold them tight, and love a lot,

And thank the Lord for what youve got.

Elaine

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[Guest Yvonne]

Hi Joanne

Best wishes to you and your family. Your poor dad is bound to struggle with so much trauma at his age. I hope he's on the mend but it's going to take time - must be really tough for you.

Yvonne

[Karen]

Keep positive Joanne, any small step forward is a good sign .... Don't think that the medics know 100%, as to how we're going to recover .... many people have gone on to prove them wrong..... as long as he's going forward and not going backward, then that's what you need to focus on xx

[Guest wilko74]

Hello again

An update: my Dad is now speaking but his words are completely jumbled. We're told they are "words" - no longer just relatively quiet mumbling/muttering - but these are jumbled. He's also now awake most of the time and the decision has been made tonight (Sunday) to move my Dad from Intensive Care to a High Dependency Unit next door. That must be good mustn't it?

ElaineW: Thanks so much for the poem, which really is a comfort. I can't honestly thank you enough as I know both our parents are a similar age and therefore our experiences are likely to be a little similar.

And to everyone else: I cannot thank you all enough (I know I've spent much of my time on here saying these two little words but you hopefully appreciate they are meant just as sincerely each time I say this).

Joanne

[Janet]

Hi Joanne

What great news you must be really relieved that at last your dad is finally improving. Keep us posted on how he's getting on.

Janet x

[Karen]

Joanne, ditto to what Janet has just said...... Definetly good news that they're moving him to a HDU ..... I know that the nurses looked after me very well on HDU .....

[donna79]

Fantastic Joanne x x x x x keep us updated x x x

[Louise]

great news Joanne..xxx

Louise.xx

[Guest wilko74]

Is very jumbled speech a really natural (or rare?) thing for sufferers of SAH at this stage of things and, if so, what possibly happens next..I mean does the patient (in this case my Dad) receive some kind of speech therapy or is it too early for that? And is the jumbled nature of the words just the brain trying to re-wire itself or something? Again, I know this is so early to be asking such questions but any advice or thoughts would be hugely appreciated.

Sorry for my ignorance and thanks again for everything.

Joanne

[Louise]

Hi there

Yes I got speech thearapy to help with mine...

Your description about the brain re-wiring spot on, its a massive computer, I always say its not a broken limb its more complex than that kind of re-booting itself....

take care

Louise.xx

[Karen]

Joanne,

Think that many of us initially had speech problems to a varying degree ..... I know that I often found it difficult finding the right words and in the first few weeks it was particularly pronounced ..... the fatigue, pain, lack of concentration, confusion etc don't help ..... When I left hospital, I had to get my husband to deal with the telephone calls or any form filling..... I just couldn't deal with anything like that.....I just couldn't find the right words and yes, I would get them jumbled up ..... it's something that improves over time, but would imagine that if it's particularly bad, then you would be offered speech therapy. As your Dad is in HDU, I would imagine that it's something that's probably not a priority, until they feel he's strong enough and on a normal neuro ward.... I can still get a bit tongue tied when I'm tired, especially if I'm socialising and it's normally at that point when I know that I need to get some rest.

[Guest Yvonne]

Hi Joanne

Apparently I rambled a lot when I was still in hospital and even months after my SAH I had difficulties with engaging my brain and speaking at the same time - I would start talking and then just stop mid-sentence, and I didn't always realise that I'd done it. I didn't have any speech therapy and it just gradually improved until I spoke normally again.

Yvonne

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