hi, i'm gail, and i need lots of advice....

[hwyaden]

my name is gail and my husband had a massive bleed on the brain a month ago. i'm feeling pretty lost right now so could use some good advice from others who've been through the same thing.

[Daffodil]

Hi Gail. So sorry to hear your news. We will try and help you a little if we can.

How is he doing? Has he had any consiousness since bleed? My family adopted the approach that only one family member was allowed on google as otherwise you would scare yourself silly eith the facts. i myself didn't learn any of the frightening statistics until a year down the line and sometimes I thik that ignorance is bliss.

Massive doesnt have to mean no hope, no future. I had a grade 4 bleed with complication of hydrocephalus and I can't tell you that 18 months on everything is rosy but I feel happy, I can spend time with loved ones, I live independently and whilst the bleed has left its legacy each day brings a tiny more healing.

So I guess that's what I'd say to you, every day brings a tiny amount of healing. Talk to him lots. I heard everything and felt the love around me.

Yes it's going to be tough but there is always hope.

[Louise]

Hi Gail, warm welcome to the site glad you found us.

wise words from Daf, they said I'd be 80% disabled & I'm not time is indeed a great healer...

[hwyaden]

Thankyou so much for your reply.

he had a bleed and they removed a large clot from his brain. he had a drain put in and was on a ventilator and put in an induced coma for 10 days.

It's now a month later, he's now on the neuro ward instead of critical care. he's got a trachy in and is still nil by mouth.

When he first came round he was very responsive, nodding and shaking his head and showing appropriate facial expressions when we told him things and talked about general stuff, but now he seems to have regressed in as much as when we visit he won't look at us and spends 100% of his waking hours wriggling out of his bed. he has a nurse with him constantly to stop him getting out and has mittens on as he keeps removing his tubes (he has to wear pads now as he pulled his catheter out ). we do get the occasional big hug off him but he won't respond to us any more. he has lashed out at me a few times because i won't let him get out of bed.

The nurses said he'd had a good day on friday -the physio had him sitting in a chair doing excercises and the speech therapist put a thingy on his trachy so he could speak and he was counting and answering some questions. i just wish i could see the improvement when we visit. the kids ask me why he doesn't respond to them any more and i told them his brain is working very hard on healing itself so he can't manage everything.

he's in hospital 32 miles away and it's horrible when we trek up there and then find him asleep for the whole hour of visiting.

Gosh this post sounds so whiny - it's all about me and how hard i'm finding things when it's my husband who's doing the fighting! i don't have anyone i can talk to about it as people either assure me he'll be up and running round next week and back to normal or they think he'll never recover. my belief is he will get there in the end, maybe not the same man he was before he will recover, it's just going to take an awful long time.

i'm feeling more miserable today as i bought another car yesterday as mine was on it's last legs and the ****** radiator broke in this one, so until that's fixed i won't be able to go and see him, and i've been going almost every day up until now.

Thanks for listening to me rambling on, it feels good to put it all down into words.

Edited September 29, 2013 by Tina
Line spacing inserted for easier reading :)

[Louise]

Sometimes writing things down is a good way to unload maybe keeping a diary of stuff.

Things he's doing is due to the bleed I suspect there will be other carers that come along and say they know that and understand.

I had a gravity feed drain in my brain and one thing you shouldn't do is stand - so yours truly got out of bed and stood they had real trouble coaxing me back down I believe don't remember that stuff been told tho...

[Tina]

Hi Gail,

A very warm welcome to BTG

Wise words from Daf and Louise ! You have come to the right place to get some really good support.

Ramble away

Look forward to hearing more from you.

Take care

Tina xx

[Daffodil]

Yep ramble away. It will help. Bless you. I always maintain I think in many ways it's harder for the people who have to be outside this process and just wait and watch.

I had a EVD placed too and yes tried to pull it out, almost managed it once...well it's very strange having a tube in your head. That said I have learnt since then that when I go very low pressure in my CSF I get VERY irritable. With a free flow drain this can to you happen super quick and the rush to your already wounded brain is horrid plus gves terrible back pain. This could explain why your hubbie is so awkward at the moment but wants to move around. his head pressure is all off plus the drugs. I found warmth helped ease my backache in hospital, talk to the doctors about what you can do to give him some comfort.

How old are your kids? Mine were 10 and 7 , i imagine you will be trying to keep normality for them too.

On the visiting. I can honestly say I really didn't mind who visited. I looked at my diary that. Started about 3 weeks in when I moved to neuro ward ( hilarious that I thought I could write, there is lot of squiggles ) but whilst I obviously relished the days my hubbie came in equally I liked any visitor. I was easily pleased. Maybe you could arrange a rota to take the pressure off you a bit? We did as it was an hour by train for anyone coming to see me. Just make sure that everyone who goes always asks the right questions etc.

He will be feeling tired constantly, in pain without question , and blooming confused from what's happened , angry ai expect plus the effects from all the drugs. I was like groundhog day and used to welcome the same visitor again and again.

So there is a book I've read since my bleed which is called ' falling and laughing' by Grace Maxwell. She is the wife of the singer Edwyn Collins who wrote ' never known a girl like you before' ( love that song!) . Anyhow, he had a massive SAH and it charts his recovery from her point of view. I read it to understand how my husband must have felt. I'm not sure what kind of person you are, this story is a bit warts and all but captures the laughter, love and most of all hope that helped them through. Maybe a little later on it would be worth a read or ask a trusted friend to read it.....

The hardest thing is being an advocate and making sure your husband gets the care he needs. do you have friends in the medical profession who can help you with this. I know that my MIL and best friend were invaluable during my stay as they could cut through some of the rubbish bureaucracy.

You need to take care of yourself too. He needs you to be ok as well, that will be important to him.

Edited September 29, 2013 by Daffodil

[hwyaden]

I'm generally an upbeat person (in fact i had a telling off from my inlaws for making jokes about hubby, how cool his scar will look etc. but that's the way our family deal with stuff).

I've got 6 kids, aged 5, 10, 13, 16, 18 and 23. they have been the most wonderful support through this and without them i would have crumbled weeks ago. our 23 year old daughter lives and works in bristol (we're in the south wales valleys). she had loads of time off in the beginning but only visits weekends now as i was concerned it would affect her job, plus she had to move house the day after her dad was taken ill so she had the added stress of that.

his estranged mother and sister have visited him but when he was a bit more lucid he kept shaking his head when i asked if he wanted them to visit again.

His dad has only visited once as he says his car is not up to the journey (which makes me mad as we've been schlepping round in an old wreck for the last few weeks and just calling the rac out every time it packs up). so really we are his only visitors and i'm terrified he'll think we've abandoned him if we don't visit often, even though he doesn't seem to realise we're there a lot of the time.

Edited September 29, 2013 by Tina
Line spacing inserted for easier reading :) When posting if you click on the first icon (A A) this enables you to add line spacing :)

[hwyaden]

i've just ordered that book - it sounds just what i need right now.

i'm amazed at the parallels between my husband and andrew marr. he had a bleed then cooked dinner for his family and went to bed with a massive headache. my husband also went to bed complaining of a headache and he couldn't talk properly. i thought it was a migraine and gave him painkillers, but he kept being sick throughout the night. the next morning i couldn't rouse him at all so it was only then that i called an ambulance

[Daffodil]

Bless you. Great that you have the family and older kids who can support but equally a huge amountof work to look after them.

Sharing what we learnt as a family. If someone offers to help then let them, they like to , but be specific about what you need ' please could u cook for us one night' or ' please could u pick up kids from school'.

Pictures up around my bed were huge help for me so I didn't feel lonely when no one was around. I had photos of my daughters covering my entire side cabinet, it gave me something to concentrate on at night or when I as in pain.

if his speech is off he may not remember when he is told that he has to keep still so just making a list and sticking it up reminding him that keeping still lets his brain heal. Explain the tube is like toilet overflow And every time he stands up he flushes all his water out! Use that humour. My sister told me my scar was where they put gerbils into my head:shock: maybe it's a welsh humour thing as my mums from the valleys and we have a very macabre sense of humour.

Can he listen to music? That migh be worth a try on a vist. Not suggesting any heavy rock but something easy listening that he likes could be comforting. Not for long though.

One of the BTG carers or others will probably add more things that helped.

And you are upbeat, you are positive, it's ok to find it all a bit much though too. It's all early days.

Edited September 29, 2013 by Daffodil

[hwyaden]

that's made my day, hearing about the gerbils! we keep threatening to play his computer games if he doesn't hurry up and get better (he's really protective about his games!). i'll sort some pictures for him too, maybe looking at our ugly mugs will scare him into getting better!

[Louise]

Pictures are a great idea helps you remember who people are, we don't mean to forget its just how the damage has left us...

[Winb143]

Hi Hwyaden ,

I hope hubby gets better soon and you get a rest also.

I was out of it and was in dreamland I had a man chase me with a rubber pipe it was my catheter not being changed

regularly.

I think the family suffer most as my daughter said to her Dad "Will Mum ever get better Dad?" he replied "of course but when?" and he sighed.

Keep in good spirits for hubby and singing helped me, so my sisters said.

I was out for a year but they say I spoke but it was dream like to me and I remember nothing.

But I am here to tell you to keep the faith and do not get down if possible.

Good luck to You, Hubby and Family and keep chin up xx

Regards

WinB143

[paul99]

hi gail

im sorry to read about hubby, it is early days so you are in for a long haul so to speak, I got lin a c/d player with her favourite tunes on for when I wasn't there,

don't worry about the time it takes for hubby to recover lin had a Traci in for over three months post bleed, lins bleed was massive a class five plus bleed but took ever so long to make or start her journey and she is still making improvements and has more than the odd step backwards.

I started a diary when lin was in hospital and im now on volume thirteen and still writing take one day at a time avoid allowing stress to build up in both you and hubby otherwise you wont be any good to him, keep everything light hearted and don't worry about things the agitation could be down to the blood being dispersed back into the body which can take up to three to four months.

let the phyiso do their job and the speech therapist it will be better for him you will have more steps backwards but they do get longer between good days and bad and hopefully hubby will keep improving I will send you a pm with my number which you can ring anytime.

Linda's story started five years ago and is still on going but im still hoping for more from lin her story is in carers support under my darling lin you may find many of your questions answered in my postings but if not call me anytime wishing both you and hubby well and best wishes to the family good luck

[hwyaden]

thankyou all so much, it's so reassuring to hear everything he's doing is normal. i wish i had some answers for the kids but they are starting to understand that he's not going to be home anytime soon. i forget how different time feels for kids. the past month has flown by for me but i guess for them it's felt a whole lot longer. i'll keep phoning to check on him for the next few days while i can't get up there and i hope he doesn't miss our visits too much

[hwyaden]

wow paul - i've just read through yours and linda's story - what an incredible time you've both had, you've really been to hell and back .linda is very lucky to have you supporting her, and all i can say is i hope life returns to something near normal for you both soon, you both deserve it after the battles you've had. xxxxx

[julie.1]

Hi!

My heart goes out to you. I had my SAH 10 weeks ago today and think it has been hard for me, but even harder for my family. I have been lucky and am doing ok with recovering bit by bit, but I do remember people talking to me and hugging me, stroking my hand etc when I was quite out of it.

One thing that helped me when I was at my worst was when people touched my hand, or squeezed it and said who they were before they spoke to me, also that they made sure I could see their faces. I think in my confused state it gave me a chance to tune into who was there and filter out that they were speaking to me not someone else. I found HDU very confusing and got confused between different snippets of information. I would overhear a conversation about someone else and think it was about me - very scary on occasion! It wasn't helped by being next to the nurses station!!

I also found music very soothing, particularly music that brought back happy memories of time with the family. I used headphones and music to block out worries and the noise of other people's visitors!

I have found this site so supportive, even on terribly down days when I wasn't up to posting. I try to 'pop in' each day even if I don't have much to say! It is so reassuring to know others understand and are wishing you well even when you are despairing yourself.

If I can be of any help to your daughter in Bristol, I live nearby - you can always message me and we can make contact.

Stay strong, we are with you.

Julie xxx

[hwyaden]

thankyou xxx

[paul99]

hi gail

hopefully the few days you don't see hubby as painful as they are you may very well see a change in him every time you see him for the better.

thanks for response it has been a trial to say the least but hopefully there maybe some answers in our postings . I hope hubby will be moved a little nearer in the not too distant future which will make it easier for you and the family lots of best wishes and keep us up to date if you can it does help talking about things take care

[tricia0304]

I feel your pain. My husband had a massive bleed in April. It was clipped and he was sitting up in a chair although still very confused but talking and moving etc when two weeks later he had a second bleed. Either the surgeon had not clipped it totally or the clip moved. He was then coiled.

Then the problems started he had two chest infections and was in and out of intensive care, hdu units. He had a shunt inserted and then got an infection and had to have it removed and then reinserted a week later. He also had a DVT.

He had gloves on the whole time coz he was always pulling out his tubes. Then he had pulled out his feeding tube and the nurse reinserted it and punctured his lung. Apparently this is very rare. He was sleeping for such a long time.

Then he was transferred to a his local hospital in July while waiting for a bed in a rehab unit. He was always trying to get out of bed/chair and it was even suggested that they would have to sedate him at night. I said no they could call me and I would come and sit with him. I felt he had been sleeping for so long the last thing I wanted was for them to sedate him. Anyway we are now in the physical rehab unit in Glasgow and the good news is he only had muscle wastage.

I do remember the nurse in intensive care at one point saying there was no movement on his left side so its amazing. They have now referred him for more cognitive therapy. Sometimes he is so normal making jokes etc and other times he is very confused. He will not acknowledge that he is in hospital. He is getting the best help available and they did warn me not to expect the same person. However I feel he is the same person, his sense of humour comes through etc at times.

I have kept a diary and this has helped me when I look back and see how many days we just sat there excited when we thought his eyelids had flickered as this was the only movement. We are now waiting on him to be assessed for further cognitive therapy as opposed to physical rehab or else they will send him home. I do recall one of the neurosurgeons saying that they would get him walking and communicating but they could not say if he would be able to have an independent life. However I do believe it is up to the individual and their strength of mind and I still hope he will make more recovery.

Our 3 kids have been fantastic but I do feel that they should'nt have had to go through this but I suppose thats life. We had lost a good friend to a brain tumour 2 years ago so we do tend to think we are lucky my husband has survived so far. Sorry for rambling on but your post struck a cord with me ie that total helplessness. I dont know what the future holds but we have come a long way in 6 months but really we are probably only about 3 months into the recovery because of all the set backs. xx

Edited October 2, 2013 by Tina
Line spacing inserted for easier reading :)

[hwyaden]

aww thankyou - it's so lovely to hear everyone elses stories.

just come back from the hospital and feeling disheartened. i hoped after a few days away i'd see a little change in him but he was no different. he doesn't respond to me at all, just keeps rolling onto his right side over and over again. the nurses aren't sure why he does that but that is all he does apart from inching his way out of bed.

the physio's had him sitting up on the edge of the bed while we were there to see if he'd respond to me talking to him but it was heartbreaking to see him sitting there, propped up on either side and not responding, just dribbling. when he first woke up from his coma we had such great hopes as he was so attentive and pulling appropriate faces, but now all that seems to have gone for the time being.

the nurse in charge of him today asked us to leave him alone and to stop talking to him and stroking his limbs as he said conrad just wanted to be left alone with no tubes, wires, clothes etc and anything touching him seems to make him more agitated and increases the rolling over. we sat quietly with him for a little while but i couldn't bear being with him and not being able to touch him so we came home.

our kids made him a huge collage of family photos for him to look at when he does become more responsive - i like the fact that there were more pictures of the ferrets on it than there were of me

[hwyaden]

quick update - he's been moved to the rehab ward!!!

[Daffodil]

Hi Gail

Sorry missed your update the othe day. That sounds like a tough visit. There were times when the kids visited me and had to leave, it was just too hard so dont beat yourself up, there will be better days around the corner.

Woohoo though that they have moved him to the rehab ward, that's a positive step isn't it.

I Can't shed any light on the rolling , maybe someone else can but have they taken his brain drain out yet? It could be overdraining maybe if he's moving around more. When I was very low pressure from the EVD I just wanted it to be dark and be curled up in my side in a foetal position that's the only position that gave relief.

Take care and loved that the ferrets got more editorial space! Bless them pesky kids eh? Gotta love em.

[Louise]

You may notice changes then in the rehab ward.

Was looking back your posts and you said hard for kids to understand its surprising how resilient they are should be ok though for your 16, 18, & 23 yr olds to comprehend though.

its a roller coaster all this.

try and take time for yourself hun because without our carers/loved ones where would WE be.

[hwyaden]

our 5 and 10 year old daughters wanted to visit yesterday and he opened his eyes while they were there. until he woke up our 5 year old was really scared so i just let her sit in the corner and do some colouring. after he woke she started creeping closer and by the time we left she was chattering away to him 10 to the dozen updating him on life

he did a lot of crying while we were there yesterday and apparently he was a menace in the night, ripping his pad off and climbing out of bed. it took 4 nurses to get him back in and he had to have diazepam. the staff said he was very calm this morning and listened to their instructions.

i went to see him this afternoon and he was back to his usual position of spark out, fast asleep

his drain is out, he's just got his feeding tube and trachy left to go.