iannuages Posted July 28, 2014 Share Posted July 28, 2014 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......... 7 Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.