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Hello to one and all, I haven't been on for a while. I need some help/ advice from anyone and everyone. I had my sah on the 16th December last year I like most people were given the statistics 8000 pa of which 50% don't reach hospital etc etc.

Sunday just gone my mother had a massive SAH it's a grade four with haematoma, she has been given a 20-30% chance of survival and is currently in a coma in intensive care she also has another large aneurysm which is currently unruptured. I have come home for two days as my son is due an operation but will be travelling down again early Friday morning.

My question I guess is if this affliction is as rare as the powers that be say then why oh why am I stood not even nine months after my first bleed watching my mother fighting for her life.

I have gone through the last few days feeling decidedly detached from this whole situation (possibly the only plus I've ever found with having had a sah) even though I have nearly got myself run over twice, fallen down the stairs and had many a detour when I start going right again. It is quite clearly registering in my head but not with my emotions which is a blessing and I believe the tools that have got me through the last few days.

The doctors fear that if she does make it she will be significantly brain damaged which is a whole new world as she's been a widow since I was fourteen so will need full-time care. My sister has turned into the wicked witch of the west demanding she has power of attorney, removed money and jewellery from my mother's house etc etc saying I haven't a clue what my mother is going through as I survived so mine was obviously not a "real" sah or a patch on my mother's, given that my sister only visited me for an hour on day nine of the three weeks I spent in hospital and not once rang intensive care or the ward to see if I was still alive I find incredibly stressful.

This additional stress is going to be having an impact on my own well being even though I can't feel it which obviously puts me at risk again.

Any help would be gratefully received

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Hi sorry to hear about your mum noone can say what the outcome will be however I will tell you that I should not be here and I am so therefore I should be in a wheelchair I am not, but the Dr's said I would die or leave in a wheelchair I did neither so as long as she is here and breathing there is hope I really hope she turns a corner soon xxx

As for your sister she isn't worth your time xxx

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Hi mum of five. I had a grade 4 SAH and all those prognosis you have for your mum were given to my family too. Just saying It is possible to have hope and for your mum to get some recovery and I hope she does.

Your sister may be having a reaction to your mum being ill and the shock causing her to behave badly but it also it may just be in her nature as you say she wasn't much help to you so try not to react and like Paul says I don't think she can't take power of attorney unless your mum had already put that in place that she could if a situation like this arose.

You will be a little detached from this but the emotion may take a hit on you , you have fallen so slow it down and try and make allowances for the emotional distress this is bringing you. My mum was also very poorly last year and I found it was hard to process that with the effects of the SAH recovery, you will need to really ask for help, tell family you love your mum but you are also still recovering so help me to help her.

As for incidence of SAH? Well I think that there are studies that look at heritary connections but the jury is out still on that , guess there are a lot of dreadful things that can knock us I am just sorry your family has had to experience it twice. So hard for you all. Take care.

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Hi there

 

sorry to hear what your going through yep life just aint fair, I was told that I would be 80% disabled I'm not yes it took hard work yes lots of tears but here I am in the early days I couldn't have even typed this..

 

Don't let your sister get to you honey...

 

yes Daf I think the jury is out on that one, no-one in my family has had a SAH, on saying that recently my cousin had what I would say all the symptoms turned out a mini stroke (still it is a form of SAH)

 

It is very hard but like I always say to carers take time out for yourself - look after YOU, in order to cope with what's going on around you.

 

take care

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Hi, 

I know a few people locally, including my first wife (so we are worried for our two sons in the future), who have had a SAH with varying recovery rates and states of well-being.  It is incredibly thoughtless of your sister to say what she did.  If she had experienced one she wouldn't be saying what she is.  Maybe she is panicked by your mother's situation and what you got is a natural, emotional, and therefore irrational reaction?  I don't know, I wasn't there, but maybe your sister needs support too.  Maybe talking with someone outside your family would help as they don't have all the emotion that goes with the territory.  Your sister is putting us all down with those comments, and believe you me, we are all with you!

 

You need to sit down with her and any other siblings/close relatives and decide how, between you all, that you can cope with this situation.  Constant bickering and emotional outbursts won't get anybody anywhere.

 

The important person here is your Mum, not a power battle between the rest of you.

 

'Power of Attorney' is a very important role and is something you need to sort out with a solicitor.  If your sister has removed money and jewellery without your mother's consent or without power of attorney then that could be said to be theft.  It belongs to your Mum.  You need to sit down with her and try to reason with her that you need to do what is best for MUM.

 

If your Mum has made a will then material things will be divided at the appropriate time in accordance with her wishes.  With respect, that could be many years away yet.  Your sister seems to be acting prematurely.  Focus on care for Mum, please don't fight over possessions, they really aren't worth it.

 

You only get one Mum, please put your differences aside and do what is best for HER.

 

I wish you all the best,

Macca

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I agree with all that has been said here.  To add, the focus is now...not how will Mum recover and to what extent.  We don't know what the future will be like, but we do know what is here and now.  Focus on that.  The rest is too big and open right now.  Day by day.  The hours.  This is what's needed. 

 

I really hope your family can communicate all the fears, the stress and stop making any fast moves until more unfolds.

 

Bless you,

~Kris

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I had a grade 4/5 SAH 10 years ago and my family were told to expect the worse. I am still here and enjoying life to the best of my ability in spite of being left with balance and memory problems. There is always hope and the doctors don't know how strong the fighting spirit of your mum is.

My son and daughter were given the opportunity to be checked as my surgeon believes that aneurysms can be hereditary. Luckily both were found to be clear.

 

As others have said your sister could be reacting to the shock of first you then your mum having an SAH. On saying that my sister laughed at me and said she was pleased it was me and not her. Yes it hurts but the most important person in this is your mum.

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Mum,

As the others have said some of us have been told (imitating OT's )

"Hmm have you thought of putting your wife/me in a home as she'll never walk

again"  Thank goodness my hubby was on my side !! and he said No way!

 

Don't give up on Mum, give it time and no stress for you or Mum as my surgeon

said it was bad for us.

Took me a year and a shunt fitted before I knew where I was.  You'll have to say to your Sis whatever you think.

Do not be brow beaten and your Mum needs all the help she can get.

Regards

Winb143 xx

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Oh sweetie, I am so very very sorry. You and your family will be in my prayers. There is a hereditary link, sadly. I ran a marathon with a friend in honor of her sister who had an SAH the year prior. When I had mine, her other sister was a great help in my recovery because she'd had one as well. My friend is checked every year. The neurologist told her that there is a hereditary link, as has my neurologist. So while yes, it is rare in the general population, it can run in families. Also, since it IS rare there aren't a lot of neuros who specialize in it. 

 

Just take one day at a time. Let your sister be background noise and do not allow her to engage you because your mother is still alive and still has a good chance that she will come out of this fine. 

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I had my sah 3 years ago and my Mum died of sah 12 years ago. It seems to run in my family. However, my brother has been scanned and he got the all clear and has been told not to worry about his children.

 

I'm sorry to hear what's happened and that you are not getting any support from your sister. How did your son's operation go? I hope all was successful x

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  • 2 weeks later...

Hi again, an update on the latest sah battle. My mother is finally starting to respond, she spent two weeks in a coma in the end. She has now been moved to a step down ward although her care is still being overseen by itu. She has just had her trachy out, she is off the ventilator but her csf is infected via the drain in her head so she is receiving antibiotics through a drip, anti epilepsy drugs as her brain is fitting and she doesn't really recognise us but she's alive.. I always knew my mother was a tough old boot ( I hate to say we are very similar ) but she has shown just how strong she is.

Thank you to everyone for their kind words of support it helped. My sister has calmed down and has resumed normal behaviour and although I do a two hundred mile round trip in school hours every Wednesday and I spend all and every weekend with her a smile from her makes it ok.

My son's operation went really well and he has healed fantastically, one of my other son's had his op two days ago and again is doing well. I just have to get me back on track now, massive head/neck ache, extreme tiredness and an ever increasing deficit. I think I probably rival the UK deficit now.

Just to impart some info with everyone, I have spoken to the powers that be and yes it can be hereditary but they go by generation s so my sister is now being screened but as it is their mum and their grandmother my children don't have to be tested.

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Hi,

Well it seems you have been through the mire and taken to the brink, but your message is inspiring.

 

You were in a submarine that hit the bottom of the sea, but your craft is beginning to rise, when previously all had seemed lost!  Human spirit is dauntless and can rise above situations when you keep your head when others are wavering.

 

My heart goes out to you and your family and by continuing to communicate with your sister and others you can overcome and cope with these problems.

 

Don't become complacent, it seems you still have a way to go yet before you can put them all behind you but at least now you seem to be on the way up.  Think positively, take in the lessons you have learned and use them to improve the path forwards.

 

It is likely that your sons will recover more quickly than Mum but take heart from that - Mum is now recovering at her own pace, inevitably slower than those younger than herself, but on the right road nevertheless.

 

Keep your chin up, sleep well -resting properly is as important as being active and you help people best when you are strong - not when you are weak.  Look after yourself properly and brightness will appear as with the morning sun!

 

Best wishes,

Macca

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I had Ventriculitis and I cannot remember anything apart from dreams where I was calling my Mum and Dad.

I woke up after shunt was fitted for hydrocephalus.

 

Keep a close eye on Mum and make sure she gets the best treatment possible,  and you get some rest also as Mum will need you all when she gets better.  My daughter used to look at the drips going into me, and she saw it wasn't dripping right, so up she went to Nurse and told her.  Nurse said "well spotted"

 

I wish you and all family well and keep chin up.

 

Love

WinB143 xx

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