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StephB
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On 24th January of this year, I received a devastating phone call from paramedics to say that Robin had collapsed and was unconscious. At the emergency dept, we discovered that he had had what the Drs described, as a devastating and catastrophic bleed on his brain stem. He was rushed to UHW (an hour away) and straight into theatre to have an EVT drain fitted. He was unconscious and GCS 4. I was told to prepare for the worst. 24 hours later, he had a re bleed and again I was told it was unlikely that he would survive. He came through.

Our journey continued with another EVT drain needed to be fitted because the other stopped working, a coiling operation (I had no idea how traumatising it would be to hear the potential risks and then sign the consent form) and 7 days in ITU before he regained consciousness. I had to leave our 4 children at home with my mother and move in with my boss to allow me to be at his bedside. He regained consciousness and seemed to know who we all were.

He then developed hydrocephalus and his conscious levels dropped and he was in and out for 10 days. He ended up having to have a shunt fitted and then 2 attempts at correcting the shunt (including one life threatening one) before he stabilised.

14 weeks on and he is now in a rehab unit 25 minutes away from home and is doing well. He can walk (with supervision) and is learning to talk again (he whispers). He has massive memory problems, particularly short term, and is still lacking mental capacity. He gets confused and agitated easily, especially when his insight returns.

I am now preparing for a discharge planning meeting with the MD team on Weds, and feeling very overwhelmed by it all. I want him home more than anything, (especially as I am less than satisfied with the care provided at this unit) but the effects of his SAH/hydrocephalus are more apparent as we are having weekend leave and I am with him 24/7.

He whispers, sometimes quite loudly too, and makes inappropriate comments, swears a LOT and lashes out and me and the children (verbally).

I now, compared to others, we have been extremely lucky and we are blessed that he is still here, but that doesn't make the reality any easier to cope with.

Robin and I have been together 11 years, married for 6, he is 39 and I am 31. I feel that I am really struggling to come to terms with how he is now and the major shift in our relationship (particularly as I am so involved in his personal care) don't get me wrong, I wouldn't not do it, but I'm in a real "it's not fair" place.

The children have had a massive reality shock this weekend (the first with them being here as well) they are 16,14,12 and 6 and have found it hard to accept how Dad is now and I don't feel that I can support them because on the inside I am falling apart. I have already been diagnosed with PTSD (keep having flashbacks at night of ITU particularly and wake up shaking and sweating and can't go back to sleep afterwards)

How does anyone get through this?

Any tips/advice greatly appreciated, I need all the help I can get. Thank you for reading.

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Hi Steph,

This is hard because it takes me back to my own SAH on Sept 1st 2010. So much of what you say about your husband mirrors my own situation. I was unconscious for almost a full week, I had the onset of hydracephalus, I had to learn to walk and talk again, I said some outrageous things whilst not being aware of doing so and had problems with my short term memory. I still have some problems with that but it is nowhere near as bad as it once was. Not only could I not remember what I said at times, I couldn't even remember the conversation!

I told a nurse she was the most beautiful woman I had ever seen. My fiancee, who is now my wife, was sat next to her. Another woman was sat next to her. I asked he what she was doing here - she is my sister! I swore and cursed at people who did not deserve it and insulted those I had no right to.

The good news is that I did get better and to look at me now you wouldn't realise there had ever been anything wrong with me. However, my pituitary gland was damaged when they repaired me and I now have to take growth hormone daily for the rest of my life to prevent fatigue. However that is a small price to pay for the quality of life I now enjoy as a result of the fantastic care I received and continue to receive from the team at my local hospital. My two boys are both adults and so I don't have the same problems as you on that front.

However, I am living proof that your situation can get better. I won't pretend that it will be either easy or quick. It is a long road back for your husband but with the right help and support it is possible. I am so grateful to the people that helped me. I hope that by seeing me walk and talk it is some kind of satisfaction for them to see me as well as I am.

I wish you and your family all the very best of luck. I will watch out for your posts and if I can help in any way I will.

Remember, the only daft question is the one you don't ask, so don't be shy in asking for help - we've all been there and know how hard it can be.

Macca

Edited by Macca
spelling mistake
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Hi Steph,

I have had a shunt fitted also, give hubby time and give yourself a break also.

I think our families suffer just as much as we do.

I found singing helped me (cannot sing lol) it kept me happy and I was so happy to be alive and see how

good my Hubby and Daughter had been.

Do not ever give up on him he will come back and things will be okay.

I wish you and husband all the best xx Chin up !!

Love

WinB143 xx xx Now smile and think happy thoughts xx

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Hi Steph. I know talking to my husband that those conversations you have as partners who have to wait and witness are the hardest thing ever. I am glad robin survived his greatest challenge and it sounds like they have got on top of the shunt now. I had to have quite a few adjustments before we got to a good setting and like others was very inappropriate and uncontrolled in many ways post SAH but it has improved to a situation that is so unrecognizable from where I was two years ago.

It will get better, slowly, yes, step backs, fraid so, but better days will come.

We as the unconscious and medicated are very very detached from the emotion and the trauma of the hospital situation and it's only later on as we heal that we really know and face the reality of what our loved ones also survived . You're doing well. Take each day as it comes and don't rush. If you're not ready for him to be home yet then make it clear that's the case or make sure you get help to get him the help he will need.

Ask anything here. Someone will have an experience that will help you.

Best wishes.

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Hi Steph,

A warm welcome to BTG.

It's such early days in Robins recovery, you've come through the toughest part.

For those of us that go through the SAH most of us are 'out of it' for some time, its our families and friends who have to watch our daily struggles. As we become more aware what has happened to us we also start to realise the impact this has had on our loved ones.

My SAH was in August 2010, and I'm still learning about the new me now.

Please speak up and be honest if you're not ready for Robin to come home.

There are some great support networks out there, Headway, Brain and Spine Foundation.

Can you talk to Robins Neuro Nurse Specialist? Do you have an understanding GP?

This will be a tough journey for you all , others strength will become your strength.

Accept all offers of help from friends and family, from helping with household chores to helping with Robin even if it's for an hours break for yourself.

You need to look after yourself too hun.

As for your children, again there are great support networks out there if they need them and would like them.

My daughter was 10years old when I had my SAH, she was away on holiday, I waved her off all smiles and hugs, she was rushed back to find me with staples in my head, I couldn't even hold a short conversation with her. I was not the Mummy she had known. And that broke my heart.

Make sure your children's schools are kept informed of the situation.

My advise is to be totally honest with your kiddies.

My daughter did struggle with things, we have had some very tough and painful conversations over the years but I have to say her school has been very supportive. She bottled her feelings up for quite some time.

Please don't be too tough on yourself, Robin has just had major brain surgery, it's bound to rock all your worlds.

BTG is a wonderful site, so much strength and support from everyone.

I send you all very best wishes.

Take care,

SarahLou Xx

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Hi Steph

Warm welcome to the site, glad that you found us.

It is early days, when everything is new and you find it hard, I don't remember that time personally but know that it was tough on my husband Ronnie, we say things that WE don't mean...

Most important things It got better, & take time for yourself don't be a martyr ask for help & when its given 'take it'

Wishing you well honey...

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