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Five years on and wanting our lives back


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My name is Ian. Friday 13th February 2009 is a date etched in the memory of my wife and I.. It's the day that I received a telephone call from a kind stranger on my wife's mobile to say that my wife Mary had been taken ill in the car park of a local shopping outlet and an ambulance was on its way..

The next few hours, days, weeks, have now faded into a blur, but the horror of seeing my darling wife in so much pain and the fear of losing her are as vivid as ever...

In many ways we were lucky. Mary was quickly diagnosed on arrival at the hospital as having a SAH which was confirmed by a scan. There were complications, as she was on Warfarin at the time for a blood condition which put her at risk of blood clots. This they had to treat, but later that night we were transferred to the John Radcliffe Hospital at Oxford. The following day Mary's SAH was successfully coiled.

 

Now five years on, we know more about SAHs than we ever wanted to. Like many other people Mary has suffered, the tiredness, shakes, memory loss, anxiety, headaches, vision disturbance, depression. Yes things got slowly better, but the experience fundamentally changed us and our relationship. Many people have shared their experiences of the early weeks and months, and this is a period where we are all desperate for information and to feel not alone or isolated..

As I read through the forum and search the net its harder to find stories of long term survivors. So here I am today, trying to write our story of where we are at now. Mary and I have been together now 35 years, but in many ways it feels like it was 30 years and then we had to start again. So as of today we have been together 5 years.

 

I'll start by listing some of the issues that are still a problem for us.. But I need to get them off my chest.. I'm sure that like many people I was so grateful that Mary was still alive, that it felt that it was a betrayal to complain. But I want my wife back, and Yes I know that will never happen...

After Mary's SAH she was retired due to ill health and given her pension.. It was the right decision by her employer although difficult at the time.. As a community worker with adults with learning difficulties she couldn't have returned to work. Now she was the one needing the support. For the first year she surrendered her driving license on the advice of her GP. But going out was a problem. Initially the extreme tiredness, but also panic attacks and anxiety and a complete overload on her senses..

Still today Mary is noise sensitive, and struggles in crowds, strange places or unusual situations. If out on her own she will avoid them. With me or other family members she will hold onto us for support.

 

Memory, Mary has memory issues. There are big blanks she for her, increasingly she tries to fill those blanks in. With photo's and stories from family members, false memories are created, she will say to me ' I don't know if I remember that or I've been told it'. For the first year or so she would repeatedly watch the same TV programmes.

CSI type programmes where a favourite. Often I would see the same programme 4 or 5 times but Mary would be watching it each as time as if it was the first. Its better now, especially for programmes that she has recently watched. Now she will say to me I watched that last week..

Brain Fog. I know many will recognise this. Struggling to find words, using the wrong words. Mary describes it as her brain working slow. She struggles to say what she's thinking... struggles to think. We laugh at some of the word confusions. But I know it's frustrating for her, and scary she can't always rely or feel confident she can cope in situations, especially new ones so she avoids them.

 

Personality, its difficult to pinpoint the change in Mary's personality. Even harder to talk or write about. Nobody wants to blame her, yes she is still the same person, but she's not. We recognise it, our grown-up children, her friend, me.. it's sometimes like there's a different person inside her skin, like her but different..

In so many ways I love her, today she was watering some flowers, she looks like my Mary, she smiles like my Mary, but she is unable to relate to me like my Mary. Our adult daughter feels much the same, I'm not sure about our son. My daughter says she had to grieve for the loss of part of her Mum. They are very close, but she had to build a new and different relationship with somebody different.

I don't think I have ever been able to do that. I still mourn the loss of the relationship we had. Do we talk about it, yes, but its always initiated by me. Mary has been unable to understand there might be a problem. She no-longer emphasises with those around us. She accepts that I tell her that I think we have problems and need help with our relationship, but its not something she would voluntarily do.

So far we are talking to the GP..

 

Here's a hard one to talk about I'm not sure anybody has ever talked about this on the forum.. Mary has no knowledge of, desire or understanding of sex. She has no memory of ever having sex. She accepts she has 2 children there fore she must have. She certainly has no desire or any understanding why I or anybody else for that matter might make love. She can manage a hug and a peck on the lips.

As a consequence apart from a couple of half hearted attempts in the first year we have not been able to make love in 5 years. Its like Mary has the understanding and emotions of a 8 or 9 year old, a pre puberty child. That also ties in with her personality. The intelligence of a mature woman but the emotions of a child.

I find it sad Mary with one very special exception no longer has friends. She couldn't make the effort initially to see people. They didn't understand what had happen to her. Slowly people fell by the wayside. She also has a large and extended family and although close they have never really grasped what she went through.

I remember Mary saying to me she felt cheated.. Because she looked the same, the seriousness of a SAH was never understood. Maybe if her head had been shaved and all bandaged.. (and I deeply apologise to people who had their heads operated on in this way). I think what I am saying is that sometimes we feel the need to SHOUT this happened to us... and we are not alight.

 

If your reading this and you or a loved one has recently suffered a SAH, please don't take our experience as being either typical or common. Whilst there are many similarities between people who have a SAH, there are are also many differences and each experience is an individual one. However I do wish we had more support. More follow ups and an understanding that the stopping of the bleeding is just the start of a long and potentially very difficult journey. Our initial diagnosis transfer to a specialist unit and the care we received then were excellent.

As well as the SAH Mary has suffered other health problems, psoriatic arthritis, TB, shortness of breath and chest pains. She also still has the headaches and occasional shakes.... One of the great frustrations of dealing with our health service is how there is no one person managing Mary's health issues. GP just don't have the knowledge and act as a referral source to consultants. Consultants will only deal with the part of the body referred to them... e.g. the foot doctor never talks to the finger doctor......

If only they would take a more holistic approach and see the whole person........ Our current GP asked us what support we had, had. Well to be honest none.. I say through gritted teeth.. Not that we hadn't asked for help... And Yes we do know we are lucky that she is alive....We spent the first few years desperately grateful, but now we want something more. We want our lives back....and I want to hold and love my Mary.........

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iannuages , welcome to BTG.
What a story of Mary's SAH. I am sure that this will help many survivors of an SAH. I agree there is very little support for us in the medical world. As you say, once we have been "fixed" hands are washed of us and we are left to recover the best we can on our own just with the support of our families.

We are here and will support you to the best of our ability. Please don't hesitate to post again, if only to get things off your chest.

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' Now five years on, we know more about SAHs than we ever wanted to. Like many other people Mary has suffered, the tiredness, shakes, memory loss, anxiety, headaches, vision disturbance, depression. Yes things got slowly better, but the experience fundamentally changed us and our relationship. '

 

Ian. I was moved by your post this morning , thanks for coming and sharing and well done for being so open, it's refreshing.

I am two and a half years on and recognise that I am not the person I once was. I react differently, I have changed beyond recognition but whilst I may look the same i have noticed that people have distanced themselves from me , maybe because it makes them sad, maybe because I am too candid these days for comfort or maybe they just aren't as keen on the different version of me. It's hard but acceptance of that is key to so much I find but I am a much more selfish and contained creature than I once was.

My husband and I whilst very close and still very much in love have also struggled , I just don't have much sex drive anymore and it's all a bit awkward and uncomfortable and I'm not sure where we will go with that one and don't have much advice for you other than keep talking.

On the memory things, even now I will struggle with short term and often wonder if a memory is real or made up. I watched simple programmes for the first year as just couldn't retain anything complicated at all. The Walton's was all I could manage! Now I rarely watch TV after 8pm as it's just too much and nothing traumatic!

Have you ever talked to someone? The trauma our loved ones go through and have witnessed is massive and on top of that learning to accept all the changes in the person you love and what you have both lost, well that isn't something to take lightly. As you say, it's like being with a different person. We know that .

The fear of going out is hard. I had to have help to not give in to the fear of doing things so that my world didn't shrink further than it did. Would your wife consider counselling? It has really helped me. I wonder if seeing a neurophyschologist would help? Maybe getting tested to understand exactly what's lost and learn some coping techniques. Again I found that useful to make plans on moving forward.

I'm sorry I haven't got anything else to offer you other than to say she's still there, she's just been very hurt and scared through all this as have you and hopefully you will keep finding sparks of the lady she was amongst the fire of the lady she now is.

Take care.

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Hi Ian

 Welcome to btg and for being so open your post has opened some very same feelings in regard to my partner who had a bleed in 2008 and survived but was very badly affected and resides in a nursing home which I visit every day.

 

And yes I want her back I want a cuddle I want her back so much .but I have to take one day at a time I long to hear her voice and her laughter but not as yet but im hoping for something to happen.

 

I would suggest you speak to the drs secretary so see if the dr would refer you so someone who could help but I think it also depends on your wife wanting to ask for help

 

 It I think comes under the vulnerable adults act so please be very careful

 

 I wish your wife and yourself well and that things improve for you both     

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Ian I was mixed emotions reading your wife's story happy she survived, sad she is not the same, angry about the aftercare however not surprised.

I know how hard it must be for you sometimes the way she is like a eight or nine year old lack of sexual contact have you perhaps thought of going and seeing a councillor as a couple and maybe talking through your problems there.

Anyway welcome to btg look forward to chatting with you sometime xxx

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Hi Ian,

 

Good post had me welling up.

 

Do you and your family tell your wife how lonely you all were when she was ill?

 

My Daughter grabbed my arm after I woke up and said "Good to have you back Mum"  and we both cried.

Now days we argue, like in the good old days !!

 

Your wife is there Ian do not let her go, it is hard but life isn't easy, talk  to her about the days when you were courting (as said in my era)

I have been married for 44 years to my hubby and an SAH changes us and our other halves,  it effects us all.

 

Talk to her Ian and she might remember the good old days.  Love is worth fighting for. xx

 

Good Luck

 

Regards

WinB143

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Hello Ian,

I've not been on here for a while - for various reasons -and yours is the first post I've read.  I'm nearly four years on from my SAH.  I recognise many of the traits you describe.  Sometimes I wonder if it is harder for the sufferer or for those around them.  The answer is a recognition that it is difficult for all caught up in it.  Unless you go through it yourself, you cannot truly understand.

 

I can empathise with carers but I cannot truly understand.  I suffered a SAH and understand that.  You are the other way round.  One of the major problems for sufferers is that they often look and sound the way they did before.  It's like looking at the body of a car and wondering why it won't go.  It used to run but it doesn't now.  It's only when you look under the bonnet (hood for our American friends) that you realise there's no engine.

 

Patience, laughter, love and time, surrounding yourselves with the right people - these are the things that make life easier and allow progress to happen -at varying degrees - everyone goes at their own pace!

Best wishes Ian   -keep the love - progress will happen, although it can be frustrating waiting for it to happen!

Macca

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Ian,

 

I am almost 3 years since SAH and see myself in your wife as you describe her.  I too have become very childlike in my adult body.  I am, however, very much like the child I was, so I'm hoping that with time, I will become the adult again.  It is so funny how I can reason through some things and yet others elude me.  I know that my changes affect my husband as well.  He has been such a good sport and really steps up with whatever is needed at the time which I know you know...that changes constantly.

I know your wife is truly grateful even if she can't express is...maybe she can and doesn't, but that's because you forget the most important things sometimes.  I have no idea why I can remember to take out the trash on Sunday night, but can't remember to do the important stuff that really interests me or that I plan to do.  

 

I have heard from people who still see signs of recovery after 10years.  That keeps me inspired.  I also started volunteering my time at a inpatient rehab to talk to those who have had any kind of neurological event.  It keeps me interacting with people on a set time that doesn't require working every day.  I love it.  I can't even imagine going back and doing what I did before SAH...I no longer desire it.  I am truly changed.

 

Wonderful to hear your post!  Keep coming back anytime.

~Kris

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