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I'm freaking out and need some help.


neveluna

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My mom just had a SAH on 21 April 2014. Coiling was done on 22 April 2014. Up to date, ETT, EVD and CVP have been removed.

She is conscious yet not responding to any of our callings. She doesn't recognize any of the family members.

She also hasn't been making a single sound since she turned conscious.

I have absolutely no ideas on what i can do and i am freaking out.

Need some advice.

Edited by neveluna
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It's very early on in your mother's illness she needs time to recover

Hope she starts to improve soon xxx

I wasn't answering my family either I just used to lie there listening speak to her surgeon I am sure that they will be able to reassure you xxx

Edited by jess
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Hi Neveluna :)

A very warm welcome to Btg.

As Jess has said it is very early days for your Mum. Her brain needs time to recover. The smallest things will make her so tired, she will sleep a lot.

Maybe you could read her a favourite book or play her favourite music.

Sometimes others have said they just wanted quiet and loved having their hand held, or gentle massage, even though they could not respond at that time, they were aware.

Such a very hard time for you and your family. Try and make time for you to relax and eat properly.

There are others on here that have been or are going through what you and your family are.

I am sure they will respond when they can.

You will find lots of helpful advise and support here

Take care and keep us updated on how things are going.

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Hi Neveluna

Understandable to be worried and scared about mum but the biggest gift you can give her right now is time. Keep sending her loving thoughts and talk quietly and gently to her, hold her hand, put up picture of family around her bed which will comfort her. Make sure she is comfortable in bed, so are her feet warm etc mine were freezing ? Things like that make a difference.

We all react differently, I was harder to shut up not that I made much sense after I came round after the first week in ICU and it was weeks before I really had any grasp on reality and was able to communicate in ways that made any sense. Other people on ward were completely silent...think back to how did she deal with things before the SAH, would she be quiet or talk it out, I have a theory that these traits get exaggerated in the aftermath. It may be that she is trying to work through of all the jumbled up messaging , pain and feelings that will be in her brain right now and to process what has happened and that she is doing all that silently.

10 days or so may feel like an absolute age for all of you waiting but in terms of the brain assault that has just happened it is just seconds into her recovery so remain calm if you can ,maybe keep a diary and celebrate every tiny step of progress that mum makes.

Ask anything here as someone will have an experience to share.

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Hi Neveluna,

Welcome to BTG. In terms of what has happened to your Mum, it is still very early days yet. I was unconscious for a week or so and then didn't talk any sense until well after that. I had to learn to talk and walk again. It's always difficult to deal with because of all the emotional stuff on top of the event itself

Time is the thing. The old adage that time is a great healer is never more true than in the case of a SAH.

I think when this happens to you, your brain retreats into itself as a kind of defensive, protective, mechanism and comes out of itself in its own time and in its own way. Mum's brain will be all muddled up now after a serious assault on it and it will hopefully re-route itself in its own good time when it has worked things out a bit for itself.

How much time it needs is unpredictable. How much it will recover is also an unknown. What is predictable though is that things will be different and both hers and your willingness to change and adapt with it will help recovery as much as is possible. Remember, every day is a huge bonus and progress may be slow and will come in small chunks. But progress it is. Keeping a diary is a great idea. It will help you record her progress and over a period of time you will be amazed at the progress your Mum makes.

A SAH has many different effects on sufferers and family, but one thing that everyone seems to agree on is that the road to recovery is a long, slow, process and that every journey starts with a single step.

I wish you well. Your Mum needs the support of everyone around her and will need it for quite a long time. Your Mum needs time - and your time - please give it to her, she deserves that.

Any time you need help, we are here.

I wish you well

Macca

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Good advice and wishing your Mum well.

I think that quite a lot of us were on some heavy medication during the hospital stay and that probably doesn't help with the state of confusion that you feel. I thought that Nurses were 1960's type Air Hostesses for a few days, so goodness only knows what the state of my brain was in .... completely weird!

I would also say that the level of tiredness that you experience after a brain bleed and also the weakness that you feel is pretty horrendous and hard enough to keep your eyes open for a minute ... but I suppose that's the brains way of healing by shutting down to some extent for it to start repairing.

One thing that I would say, is to make sure that your Mum is eating ... Because I found that there just wasn't the help in hospital and many a time I would nod off and my food would be cleared away .... not easy having to lie flat, cut your food up and try to feed yourself when you have little energy.

xx

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Hi Neveluna,

I know it's hard for you to watch your Mum but give her time and more time xx

I agree with what others have said, and you will also need a rest but make sure Mum is

being cared for.

I woke up and at first thought I was at my old house, so my hubby wrote address on wall and every

morning he'd ask me where I lived. I'd glance up at note he'd say "No looking Win"

Without my family I would be lost.

Good luck to your Mum and never give up, you will get tired but one day she will be there.

I remember even though in dreamland my daughter squeezing my hand, she was doing it for

movement as my hand was dead.

Good luck to you All and sing to Mum xx

WinB143

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Hi everyone,

A great Thanks for all the help, info and advices. Even a bit is helping a lot.

Mommy just had her latest CT brain done a couple of hours ago. Doctor saying that result is good and there is no need for any shunt to be inserted.

Still gonna be observed and monitored for any vasospasms.

She is moving her limbs too much, restraints have to put on her. Worrying that she might just pull out any of the lines, including the nasogastric tube.

It really had awfully been a nightmare to the whole family.

So much uncertainty seems to be ahead. Now, everything is 'time and waiting'...

Family members been watching over her all the times around the clock, i been watching over her overnight since her admission to ICU.

I know that i need to get some rest for myself, but i am having phobia of leaving herself alone at night. Even when i trying to get rest at home during the day, it feels to me like i didn't bring myself back home. My mind and heart are with her in the hospital.

Edited by neveluna
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hi neveluna

take one day at a time my lin didn't respond for three weeks I sat there and held her hand and rubbing her arm slowly everyday all day

take a Walkman in which is what I did for lin, time is a great healer all we can do is sit and wait that's I know is so so hard without anything else going on

have the drs said what class of bleed mum has had? I know how you feel sitting in itu with everything going on around you I did lin was in itu for over month before being moved to a neuro ward but moved she was so I hope mum will be well enough sooner rather than later before she shows signs of improvement.

I take it mum is being fed via the n/g tube but as I learnt the hard way make sure you take time for yourself to decompress and relax. I know that sounds stupid but I learnt the hard way, when someone took my phone and made me sleep and in after thought the couple did me a favour, which I can not repay so make sure you relax and take time for yourself

I will send you a private message look on the top right side hand side under notifications good luck and take care

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Neveluna,

Please don't let yourself become weak and run down. Mum needs a strong you, properly rested. Your help is less efficient if you are weak also. Set a rota with other family members, Mum will still be there when you come back! Try to rest and do what the others say, talk to her, sing to her, take a news paper and read stories to her, squeeze her hand, tell her you love her and talk to her as though you were talking to anyone - it can be difficult if there is no reaction at first but it will be important to her. Take a break now and then and come back and start again.

Good luck

Macca

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I can completely relate to all your feelings and emotions. I didn't listen to advice and didn't leave my husband's side while he was in ITU, it's so hard to leave them but ITU is so draining, I just used to sit there obsessively watching the monitors and the EVD. When Robin first came around he didn't know any of us either. I would just talk to him quietly as if he did know us and I made him a simple scrapbook with immediate family's photos names (and ages for the children). He still uses it now although his long term memory seems to have settled.

Robin had to have gloves that looked like boxing gloves put on his hands because he was always going for his tubes but he still managed to pull the NG tube out quite a few times! Determined! He hated them as they would make his hands sweaty but we would be allowed to take them off when we were there visiting as long as we held his hands.

Try and look after yourself, although I know that you feel that you are the last on the list of priorities, your Mommy needs you to be strong for her. Be kind to yourself

Steph

Edited by Tina
Line spacing inserted for easier reading :)
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