Hi, my husband has a rare form of encephalitis, autoimmune limbic encephalitis. He has been unwell since last October. In early January he had several severe fits and was in hospital close to death for a while. He recovered and I was over the moon, not realising what lay ahead.... He has been out of hospital since early February and life is grim. He has little insight into how he is behaving in his book it's all me, he's fine. He is angry, critical and cold. Wants his own way all the time and behaves like a teenager. He is so wring money without much thought, ran up a mobile bill a couple of months ago and spent £100+ over his minutes, he puts electric fires on silly hilly and leaves them on and recently spent £1200 on a motorbike, he can't drive! He says this is none of my business.
I am so grief striken and desperate to know what to do, I feel I am losing him and that he doesn't want me or our marriage anymore. We have a very supportive GP, but she doesn't live with him 24/7.
We have agreed that the only way we will survive is to spend time apart and I went to collect him after a 10 day separation and within minutes I was struggling, there is no emotional warmth or contact.......
I guess this is a familiar story ? I would like to hear from others who have had similar experience, how does one manage, is there hope?....
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Desperatedinah
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Apart from Headway there is the Encephalitis society. They too have a nurse available to speak with you and guide you. Do contact them as they deal specifically with individuals and their families in situations like yours.
Thanks for your reply. our GP has referred us for neuro psych but there are funding issues where we live so nothing is happening quickly, meanwhile I feel my husband is on a destruction course around our marriage and we've only married 3 and half years second time round, I am heartbroken.
I can very much empathise. I am married to a man who is very selfish and always has been- yet I have always managed to cope as I love him dearly and when he is behaving himself all is ok. I mention this because he too is now struggling with a wife who contracted encephalitis 2 years ago. The boot is on the other foot as they say. I find no pleasure in this as I no longer tolerate his selfish ways and it causes many problems. My levels of tolerance and negotiation are down the pan. I very easily get confused and forget what I may have said or done and I do not seem to be able to stop myself when I go off like a pop bottle- which beleive me has never ever been how I once behaved. I remember for a very short time if there has been an element of shall we say unreasonableness , but just as quickly forget what I have said or indeed what an argument may have been about and as for who said what forget it- I have no recollection.
You sound like a very caring lady and I really do applaud your standing by your man, but please please look after yourself. I am so sorry I have no solution for you. All I can do is give you perhaps a little insight into your husbands new world if it is anything like mine. It is a world of confusion and at the same time a perception that the world and those in it are against you and do not understand your thinking. At the same time I can accept that this very thinking does not always relate to the real world around you and feelings can be quite protective of oneself and not necessarily viewed from the bigger picture of the needs and expectations of others. I have found that my tendency to revert to aggression is a new "option" for me. I do not like it but that is where I am at this point in my life. ( Please note I am not physical just verbal) To be very honest I do not like the new me and have a sense of something isn't right, but cannot seem to fix that something. My current position is take each day at a time and just try to do my best.
Anyway enough of me and I do not know if any of what I have said helps in any way. I imagine you have already tried to understand your husband and I would also imagine that it is very difficult. Best wishes to you
Wow Clare, I am bowled over by your email and the courage it must take to "own" this stuff. It's enormously helpful, much of how he is rings bells in what you've said, like him not remembering an argument or its subject. I'm left reeling and staggering round carrying the emotion of it all and he's fine and cheerful. Although he does bear huge resentments at times over perceived injustices and keeps dragging them up at every opportunity.
It's enormously helpful to get an insight into how his brain might be, the confusion,the memory loss, the defensiveness and anger. He's right about everything and everyone else is wrong and should look at their ways, is there a similar vein for you a sense of superiority I wonder?
Your comment that you sense something isn't right but can't seem to fix it feels like it definitely applies to my husband who I see as doing things to try and exert control.
I wonder if your husband feels about you the way gI do about my husband? No need to answer that, it's all very painful and hugely challenging stuff.
I do hope that time heals for both of you and you get all you need to me to mend well.
It would be good to keep in touch if that was possible.
this unfortunately is a typical brain injury story.
1 reguarding your husbands mobile, go to his provider and they will see somethings wrong, explain about his brain injury and youd like his phone to stop once his minutes are up.
sorry ive just seen that youve split up. i caused my wife to have a melt down, she went to our gp had another in the surgery and i was referred to a psychiatrist..........best thing that ever happened to me, ok it meant me taking meds to control my aggression but we have a good life.
please try and go down that route, but first maybe you need to get mri scans for your husband to see how much damage these seizures have done.
Thanks for practical tip about mobile, it's less of a problem now, sadly I think some acquaintances have got fed up with him and the phone calls are many fewer.
He was referred to psychiatry but they won't see him on grounds of him having organic brain disease. I know beggars belief but that's Wiltshire mentality for you!
Will ask GP about MRI although neurologist is adamant he will make. 90% recovery in 12-18 months...will we survive? We haven't split up (yet) !!
Thanks Steve, I have to say I really rate our neurologist, she was on to my husbands diagnosis the first time she saw him and has been generally very responsive so I'm quite reluctant to change. Also he trusts her and where he is now in the illness I'm not sure he would necessarily respond well to a new person. But appreciate your thoughts.
Thank you Dinah for your very supportive response - much appreciated! I really related to your "he's fine and cheerful" comment and the context in which you described it. I wouldn't necessarily describe having a sense of superioty for myself, more like, hubby got it wrong again! Used to ignore HIS real sense of superiority, but have no patience at all now. We have been married for 40years plus and it is very sad for the two of us that I can no longer live calmly with his demanding ways. Still 2 years later he is still with me, so we must both be working at it. Having said that Dinah we are all different and we all of us can only do the best that we can. All my deepest regards to you and your husband. Clare
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