Headway
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I feel like I have lost my sister.

In march this year my sister had a brain tumour (grade 2 meningioma) removed but had a stroke during surgery and suffered severe swelling of her brain 2 days after and had to have her skull removed again. She was not expected to survive the weekend but she did, sadly though she is paralyzed down her whole left hand side, partially sighted and badly brain damaged. Its been a rubbish couple of months for us all. She may still be alive as people like to tell me but she's so not the same person in any way. My only sister and now I barely recognize her at all.

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It isn't surprising your sister has sustained this damage after such extensive surgery......but such a short time afterwards is too soon to be calculating the outcome. She will never be the same as before, and that will be hard to get your head around for a while......but you will. People just do adapt, they don't have a choice. This is harsh, but a fact of life. I promise you, you will learn to cope as time passes and you will develop protectiveness and love for the changed person.

We have experienced a similar event in our family and, although we have grieved for the loss of someone, we have been so concerned with his care that the transition has taken care of itself.

Please be aware that a) it is much too early for significant signs of recovery and b) no one, not even the doctors, can predict the level of recovery for your sister......and people can make surprising progress even when the prognosis has been poor.

I am so sorry for what you are going through. Try to be strong. Best wishes cat xx

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I am so sorry to read about your sister. Cat has offered sound advice. It is very early days and the brain does take a long time to heal.

My son Ed suffered a brain injury that left him in a persistent vegetative state. I have lost the son I knew and loved for 16 years but I have learned to cope by thinking of those 16 years with the old Ed as a blessing. I love the new Ed just as much but in a different way.

Take care and stay strong. Remember that many people just don't know what to say in situations like this and can upset without intending too at all.

Hugs x

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Performingtart, SandraEB has good insights. My son is also in a vegetative state after an accident almost 4 years ago. While is is still living, the son I knew is nowhere to be see, and I have another one in his place. But we care for him every day, because we love who he was, and who he is.

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Hi, I'm looking for people to join a support group. Will you email me at grantmaryweiss@sbcglobal.net? My nephew has a severe TBI and it's not looking good. :(

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I agree wholeheartedly with the comments posted. I wasn't expected to live but here I am, my life will never be the same and I do the best I can daily, its just so hard at times especially

when well meaning people say "at least you're not dead!". I put it down to people not knowing what to say, sometimes it would be better if they said nothing. Have patience, I know its not easy but its amazing what the brain is capable of and take care, your sister needs you, I needed mine she was such a comfort x

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Couldn't agree more with the "at least you're not dead" part. It comes from a good place, but sometimes I can't stand it.

People have to go through such hell, and it's a lonely affair, no matter how many people you have around you.

I believe in people, they are capable of such amazing things, and so are the both of you.

Hang on in there.

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What to say???

SORRY to say, the old personality of your sister has DIED, there is a new driver at the wheel, but the shell is still her.

like I remembering, going to the WAITING ROOM, I CALL IT, IT'S HOW YOUR LIFE COULD OF BEEN, IF SOMEONE OR YOU MADE A DIFFERENT CHOICE IN YOUR LIFE???

Cos life is made up of CHOICES, YOU MAKE??? GOOD/BAD???

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their is some good advice here, so wont ramble on

i have to disagree somewhat with ZombieDen, as everyone is different and as the others have said it is very very early days

and whilst their is a chance of personality change, its not all bad, i have become a better person because of it, any my family says that glimmers of the old me pops through now and then as if its fighting to get out.

and not everyone has a personality change

also remind her of her, remind her of things that happened in your childhood, if she has lost memories help her build them back up by talking about what you did when you were kids, so she can create new second hand memories from them.

and if she gets angry ior says horrible things, trust me she doesn't mean any of it, anger is a big part of head injuries, and nothing she says is personal (although it may feel like it and even be aimed at you) she probably wont even remember what she said this is hard i know and not taking it personally is even harder.

and above all be honest and open with her, try not to tip toe around issues, tough love is as important as sympathy, i am guessing most people here will agree with this point .

things will be different, but that doesn't always mean bad.

i hope her recovery goes well, and remember its still so very early

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Hello performingstart,

Thank you for your post and I am very sorry to hear of the situation with your sister. This is a huge change for her and the family to have to deal with.

As always I think the advice from our members is excellent and please do post any further questions or updates on here - the support comes from people who truly understand what you are all going through.

I just wanted to let you know about some of the services that Headway offers, so you can contact us as and when you need to.

We operate a network of local Groups and Branches across the country who can offer face-to-face support. From your profile it looks like your nearest service would be Headway Bradford. You can contact them on 07856 076 866 or headway_bradford@hotmail.co.uk

Our national helpline is also available to talk things through in confidence. We can send information on the effects of brain injury, caring for someone with a brain injury, and provide details of further rehabilitation/support services. You can contact the helpline on 0808 800 2244 or helpline@headway.org.uk.

I do hope this information helps,

Best wishes,

Headway.

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Hello - I am not all that confident about Headway.Gauteng (South Africa), but we shall find ourselves anon.

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Hi coetzeegisela,

Thank you for your post. I just wanted to mention that Headway Gauteng is not part of our organisation, but an independent South African charity. Unfortunately we can't really advised on local services in another country, but we would be very happy to provide any general information on brain injury you would like. Please don't hesitate to ask if you need anything in particular.

Best wishes,

Headway

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Hi, thank you so much for all of your comments - I am genuinely touched to know there are people out there who care and know how I am feeling. Today was a tough visit, without going into too much detail Sam (my sister) currently has c-diff (hospital super bug) and was constantly messing with herself and getting all mucked up but she is very child like now and if you tell her not to do something and explain why she just keeps on doing it and gets all stressed and starts crying and telling people to leave her alone and stop stressing her out. Its been a tough day. I love the days where I see the old Sam and we can have a "laugh" - she doesn't laugh as such just makes a funny sort of Elvis "uh huh" noise lol, it doesn't help that she has paralysis in the left hand side of her face aswel :( I love her to bits still but I just feel like part of her has gone forever. I feel sad that she will never drive over to see me again and walk in saying "put the kettle on and crack the biscuits open". Silly little things bug me. She had such a good job (manager for day services for people with learning difficulties) and was well respected by her staff and service users and now she is quite like a lot of the people who she used to care for, its so cruel. It wouldn't be as bad if she wasn't paralysed but she has technically lost half of her body, I just can't believe how much she has suffered. I think about her all the time and then I go to bed and dream about her, there's no escape. Sorry for blathering on, I just need to talk without actually talking to someone face to face. These days if people ask about her I just end up crying and then I get angry because I have cried, I hate crying in front of people. Anyway, here ends this evenings moan x

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as a person with physical disabilities, i am confined to a wheelchair, i can tell you, that whatever it is, you just get used to it, and although initially its a steep learning curve, it is something you accept and get used to.

life still goes on and you make the best of it, despite your issues, yes it will take quite some time, but things do get better, and i think people looking in at you feel that its worse than you do,

also there is so much help available in terms of things like adaptations for homes and cars, that you should never say never, i have a van that has a lift and i can wheel straight into then either drive from a special seat or have it set up so i can drive from my wheelchair.

things may look bleak now, and no one knows how well she will or will not recover, but most of us have come a very long way indeed, and we don't give up, we keep fighting despite the odds.

i wish you and your sister all the best.

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Hello - hemiplegia can get better as well - my boyfriend has it, and has learnt to walk again, not brilliantly but he can get about. Your sister is in early stages, some people take a long time to walk again, not everyone does of course, and you've got other complications too, but believe me when I say there is definitely life after brain injury, it may be just quite different to what you thought it would be. And day by day it does get a bit easier too.

Paula

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Things were a bit up and down today, she refused food again - don't know if this is brain related or psychological but she has eaten since before her op on march 13th as she is never hungry or she is sick before the food even touches her lips. She also refused to be washed and to be put in the big wheelchair but physio came and told her that the psychologist was coming to see her this afternoon so she would have to be in her chair so she agreed so long as the nurses weighed her while she was in the hoist lol She had gotten very upset and stressed when we had tried to persuade her to be put in the chair earlier and she was again quite child like in her emotional state. When she eventually went into the chair she was fine but then just seemed to be in her own little world messing about on her mobile, today in particular she seemed very mentally disabled - I don't say that in a bad way at all but it was just very upsetting to see her like that.

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As shown by Kirk5w7, please google ' Welcome To Holland '. I found it so clever, and it can apply to any of us who have suffered a traumatic change in our lives. Hope it helps.

cat xx

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I feel for you. it is a hell of a shock and you are grieving . Once again you need ' time' to come to terms with what has happened. have you spoken to one of the local Headway nurses (a godsend!) as they could help put you in contact with someone that may be able to help you-anything is worth a try! xx

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