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Lauren

Families and friends: How did you cope?

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Hi everyone,

I'm Karen's daughter, Lauren. :)

Before last year, I never would've realised how much of an impact the SAH had on myself and the rest of the family.

 

I think the worst thing about the SAH was knowing that everything was out of your hands and that you had no control over the life or death situation. That night I didn't think anything could possibly get worse until we suddenly had a powercut. I don't think somebody liked me that day! :P

 

I coped by talking (probably far too much!) about it to my close friends but I also coped by taking my mind off of things - after mum's SAH, I hated staying in the house where it constantly felt empty and strange for a long time. Her SAH affected me deeply for a long time.

 

I didn't like how my brother and my dad hid their emotions as it made me feel as if I was overreacting. I coped by crying, whereas my dad, knowing he had no control over mum, coped by over-controlling everything else, such as the housework.

 

Mum's SAH has made me stronger as a person and has made me a lot more appreciative of the people around me. I also think mum coped amazingly with her SAH and I admire her for that.

As a relative or a friend of an SAH sufferer, how did you and others around you cope? Are you still coming to terms with the great impact the illness can bring?

Lauren x

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Hi Lauren,

I wish I had a daughter like you. Bless your heart. I will ask my husband to add a few thoughts here soon. I know this whole experience has been startling for him too. He's been wonderful. The best of nurses and guardians.

Annie ps... music? art? chocolate? we have so much in common! :)

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Hi Lauren,

Well it sounds like me and your Dad have quite a bit in common!!!! I went mad for housework when Heather was in hospital for 3 months. All I could think was the house has to remain pristine for when she comes home. I thought this even when I was told that she may not be coming home.

 

I am coping on a day to day basis, even now. It has been the hardest thing that I have ever had to do. I was faced with the prospect of being a widower and a single parent, I was going to spend the rest of my life without my best friend, my lover, my soulmate, my wife.

 

When the initial trauma wore off and I realised that Heather wasnt going to die I began to set targets/ mile stones to work towards. The first one was to get Heather out of hospital for overnights, once that was achieved my next one was to get her home. after that it was get her better. I have to measure each step and re-evaluate the next one as it happens!!! I suppose that I cope with the chaos by trying to put it in order. I have become very regimented in how I deal with day to day stuff.

 

Emotionally, I am still learning about how to cope. I have come to terms with the early stages of Heathers illness and the impact that that had on me and our son and I am coming to terms with the long term implications as they happen. I am closer to my family now after years of self-imposed excile as the 'black sheep'. I also know that love is a second to second thing and it is unconditional, to love someone is not set in stone, love to me has become fluid, an ongoing eternal way of relating to the people around you.

 

I cope by focusing on the positives. Sometimes its hard to do but I keep on doing it.

I hope this helps in some way. Feel free to ask me any questions, I will answer them honestly and openly.

Take care .

Andy

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I loved your post too, Andy. I especially loved the analogy of love becoming fluid in your life. I know exactly what you mean. It's part of our appreciation for life that is enhanced by this whole experience. I told Jack about your post and he was impressed too.

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Thanks for the reply, Andy!

You come across as a very optimistic person and I completely agree with the above posts. Later on in life I hope I meet someone who is as caring!

I also read your article on Heather's SAH. Do you write at all? I thought that it was beautifully written and I could relate to a lot of your feelings, especially:

 

Quote
I thought ahead to a future without you and I saw an emptiness that still haunts me......People were grey and I was alone.

 

Nothing and no one is a comfort to you.

I found your article to be very comforting in knowing that at least someone else went through the same sort of emotions as me. I imagine it must've been very hard for you to have written that.

 

I find that most people don't seem to understand the seriousness of an SAH. Though I understand this, I sometimes feel like an overreacting idiot in front of some people! If you say the word 'cancer', people are automatically sympathetic, if you say the word 'brain haemorrhage', nobody thinks it's a big deal, which I can find a bit frustrating sometimes.

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I've just been looking through some of the older threads on BTG and have come across this one, that was started by my daughter Lauren, about a month after the birth of BTG in 2006. At this point, we probably only had about 5 or 10 members and only a couple of those were family/carers.

 

As many of you know, both of my children encouraged me to start up this forum, due to the lack of support/recovery information post SAH/Stroke on behalf of both the survivor and family/friends. One of my subsequent aims has been to encourage family and carer's to come onto this site and share their problems and worries or for those that just needed an outlet to vent their emotion.

 

Anyway, enough of my waffling on, but thought that this topic was worth "bumping" up again, as now we have way more members, it would be interesting to hear how you coped or how your family coped at such a traumatic time?

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I often think about what you have achieved in commencing BTG. I truly think it is remarkable.

To have the vision to start something like this and the passion to continue with it is very inspiring.

BTG saved me from a serious emotional downturn in the Summer and I am so glad I found it.

BTG helped put a lot of my problems in context and I began to work things through better.

The community you have created is amazing and you can be very proud of it. I for one am indebted to you.

 

My psychologist told me that a brain injury, whilst takes some things away, it also gives. I accept that, like a lot of us, when you commenced your recovery, you were staring at a lot of closed doors.

But my goodness, look at the one you opened!

Thanks Karen, for all you do.

Lynne xx

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hi Lauren

at first i didn't cope, i fell to pieces when lin collapsed. yes i treated her when she did collapse until the ambulance rapid response turned up, then fell apart the time it took for the ambulance to turn up, then to be told that she was being flown to hospital. i went on auto pilot until she was lifted into the helicopter for the flight, then fell apart again. i was driven to the hospital, a journey i couldn't remember. i remember walking into resuss and being told no one else would touch her operation wise. i remember being taken home numb

 

even though ive treated many people in my career some which affected me, but never like this. lin was my world, she didn't deserve this. when we were together it was like being in a glass tube there were no lies, no hidden agenda and when we held each other we melted into one. i had never felt like that in my entire life.

 

i was at the hospital at 5 am the day after surgery, i didn't want to lose lin. even went i went to the chapel at the hospital, i felt very alone i felt as i walked into the chapel like i was inside the wall of death at a fairground and the walls were so high and there was no exit or door to get out i have never felt so desolate or alone it was horrible to the extreme. i never ever want to feel like that again. i have been lucky enough to spend every day with lin, looking for the smallest bit of either movement of something, to let me know lin was still with me. some times i got something but long stretches without.

 

i went out and brought lin new clothes and nightwear and toiletries. i had made my mind up that lin was still with me because she wasn't finished with me and that she loved me as much as i loved her. there were times that i would end it if lin left me. some of the friends we had, have gone by the way, but others have stuck to us, which has given me strength and energy to carry on. hoping for more even now 2 and a half years down the line.

 

 i still love her as much if not more than before. all i can think is to be with lin and stimulate her as much as possible because that is my choice, because lin is my world without her there is nothing.

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Thanks Lynne for your very kind words and so glad that you've found this site helpful. xx

Paul, you have been a great inspiration to many of us on here, whether we're a carer or a survivor and your generosity of spirit is amazing! .... Lin is lucky to have you, as we all are and I hope that you never forget as to how valued you are .... your a good man! xx

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Oh my goodness. I was crying so hard reading this thread a few hours ago that I was unable to post anything and was going to try and just type 'sorry, can't reply yet cuz I'm crying so much' when my husband said 'hey, aren't you supposed to be at the chiropractor?' aaaaaaa! Threw my iPad, grabbed my shoes and purse and off I went! Cried all the way there!!!

 

So first, my husband has also been coping by doing housework. Which is wonderful but I really wish he would add toilets to his long list of things he does (I'm not really complaining, nobody likes toilets!). He also has done lots of little renovations like changing light fixtures, painting, light switches, fans, etc. He's keeping busy. Admittedly, I do sometimes wish he would stop and just sit with me, in the quiet. Just quietly. Just listening to each other breathe. Quietly.

 

Second, Karen, oh my goodness. This forum is my road to sanity. Im sure I don't have to explain to anyone here how lonely it is to come home from hospital with no information and not knowing anyone else whose had an SAH. I was guessing and second guessing all along the way. And making SUCH bad decisions. And honestly, I STILL am. But this forum is where I come back to each day to get grounded.

 

You guys are helping me to open my eyes, to open the door as Lynne says, even if it's ever so slowly, you are helping me to accept what has happened to me. Karen, you have helped hundreds of us. Thank you.

Reading everyones posts provides such insight, inspiration, sadness, laughter, but mostly, a sense of belonging or not being alone in this biggest moment of our lives.

Thank you.

Sandi K.

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Hello Lauren(beautiful name my daughters name too):-D

As you know we all cope differently, i went on complete autopilot when my partner Mark had his SAH. I only cried twice, the night i found him collapsed and fitting and the next day with happiness when the Neurosurgeon called me at home to tell me that Mark had came through his coiling OP with flying colours.:-D

 

I lost half a stone in weight the first week and had a monster of a cold sore appear(complete stress and worry) and went up and down to the hospital day and night for 13 days like a frightened rabbit caught in headlights. I watched over him daily for 3 months in total setting my alarm every 4 hours for his Nimipodine when he first got discharged from hospital.

 

He went back to work after 3 months and has never looked back and neither have i.We both have come out the other end very much stronger and he always had a very positive attitude one of the reasons i fell in love with him;-) so that in itself helped his recovery of that i have no doubt.

 

Ok i also had some very dark thoughts as in what will Lauren and i do if anything bad happens to him, but i tried to rid my mind of this but i know its only human and normal.

You take care pet and im sure your mum is very proud of you.:-D

Angela xx

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Karen

thanks for the comments but im just me joe blogs who has had his heart squeezed so hard and it hurts but if i can stopped what happened to me happening to anyone else i will and finding this site has stopped me doing something silly and everyone on here past and present should take the credit because without your support i would have gone off the rails big time thank you

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Hello Lauren,

My dad also hid his emotions when my mum had her SAH. Thats why I'm glad I found BTG because I felt I couldn't burden my Aunties who were also really worried about my mum and I had to have an outlet as it was a difficult time. I felt I had to be strong in front of friends and family.

Alot of people on here helped and it was good to have somewhere to write about what fears I had.

She is in a slow recovery now after her shunt was fitted, however I still worry over the littlest of things.

Take care.

:-D

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Paul, I just want to agree with what Karen said about you.

You are an amazingly generous man to others on here, especially with what you have had to go through yourself with Lynn, you still find time to say positive, useful things to everyone else.

 

Some of your posts have made me cry so much, others have made me laugh out loud and your medical knowledge and genuine kindness helps everyone. The world would be a much poorer place without people like yourself in it. If only there were more people like you on this earth and I would love to be one of them!! Your kind, caring nature doesn't come naturally to us all - but I am trying!!!!

Best wishes, Michelle xx

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Ahh Just seen what my Daughter put about my SAH my Sarah who called herself Bessie after our first Dog xxxx

 

I am so glad she found this site and put me on here, even if I was a pain as I loved to sing in or out of Key.

 

Without family I would have been lost and also this site has been such a great Help as I got my laughter back xxxx 

 

Thanks Lauren and Mum Karen xxxxx This site is a God send xxxxx

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Bless you Win!

 

Wow! I was only one year into my recovery when Lauren started this thread....it's brought back memories of how my SAH impacted on the whole family.

 

I'm glad to say that we've all come a long way since 2006! xx

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Win, I think that I was still doolally when my kids thought that this site was a good idea at 12 months post SAH! Little did I realise, that it would still be running in 2018! Think that I would have run a mile to be honest!

 

It's been run on a wing and a prayer and when I was still recovering myself and still going through all of the issues that I see from members now.

 

It's been a combination of good, sometimes not so good lol and steep learning curves with running the site... but it's been great therapy for me, to see how each of us, have passed on our own experiences, info, support and love for our fellow SAH'ers and their carers and family. That's why I continue with it. xx

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I love this post and all what you all did, for without this site us SAH'ers  would be worse off but with it  GREAT !!!!!

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