Hi - I'm just writing because I need to talk to people who understand. My Husband has MS and suffered damage to his brain due to multiple lesions. He was hospitalised in October 2015 to December 2016. He suffered from psychosis and then his cognitive executive function was affected. At first they suspected he had temporal lobe dementia.
Thankfully he has recovered really well over the past year - although he was terribly verbally abusive to me at times. He lives life totally from his perspective and I have to walk on eggshells all of the time to maintain the peace. This is ok if I feel 100 % but at the moment I don't and he is so difficult to deal with. I can't really explain how I feel but it is as if there are hundreds of obstacles in my path and I am to blame for everything. Also I'm am apparently a flawed human being and he is perfect.
He has mobility problems and cognitive issues which makes it take a long time to do anything. If I offer help he slams me down and if I am not there to help he slams me down. He is very routine based and I have to fit in with the routines otherwise it triggers a tantrum type reaction.
I do love him very much and normally everything goes smoothly but at the moment I feel upset that I can't have a normal conversation, share my dreams or successes.
We have a son and he is happy and settled which I am very pleased about. Luckily he is very perceptive and has learned to respond not to react to things which is amazing for a nine-year-old.
Is it normal to feel like this or am I just a weak person feeling sorry for myself?
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Sian123
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Yes, it's normal and living with someone like this is very demoralising to say the least! It is very sad that he is sick BUT that doesn't give him the excuse to treat you badly. When he is at his best, could you have a talk with him and explain what this behaviour is doing to you and your relationship. Tell him that you will walk away every time he treats you with such disrespect. Many of us have had similar problems to these - if he breaks up your relationship everyone will suffer so he need to try to understand this.
Thank you Exhaustedwife, I walk away mentally in my head and have learned not to react and say 'I hear you'. I think I am just emotionally tired trying to keep everything normal in the roller coaster we have just experienced. I think I am just seeing what we have lost at the moment and am sorry for him having so many challenges to face. I am proud of him and how well he is doing - he has repaired his brain so much by setting up his own gym and organising his life. He does recognise he overacts sometimes and does appreciate me at times. Maybe neither of us suit the hot weather.
Walking on eggshells is how my wife describes being around me, in that she can’t be sure what will trigger a reaction. It is difficult to observe ones self, though I am better as time goes on.
It must be difficult living with a brain injury. I need to learn more about how it affects people to understand better. It really is a case of me changing the way I think too and how I respond. Thank you.
Possibly going to a local Headway, I go to mine and my wife comes to the socials ie pub! Meeting others is hugely helpful no one is quite the same, but all the same as well if that makes sense.
My wife claims this has saved our marriage, as both have adjusted.
Hi Avena, it sounds as if you are in a living nightmare at the moment. It is funny how you think the worst part is when they are in hospital when it turns out the aftermath is often harder. I wonder if it is a control thing too. If they were difficult all of the time it would be easier to put a strong emotional shield around us but if they are difficult occasionally it leaves us totally unprepared. It does get better as their brains repair and the cognitive skills develop but the patience required to watch them make mistakes and rebuke advice is difficult. This is why your husband is taking so long he knows the end goal but doesn't know how to get there and wants to prove he is still a normal proper person.
It's like watching those films where people make the wrong choice and end up in disaster. I hate those types of films and can't watch them so not being able to offer advice to make a situation better is stressing me out. The worse thing is they can't see their shortcomings and when they do they lash out. My friends luckily are very patient with me and are still around thankfully but there is no one who really understands around.
The kitchen situation is horrendous and you are obviously powerless to get anything done about it. That in itself is distressing. I had a new kitchen fitted when my husband was in the hospital and every time he goes on one he slates me for getting it done when he was not there and that he should rip it out. I only did it because I thought I was going to be a full-time carer and it would make everything easier. I wish I could offer a solution for the kitchen but I'm afraid I can't.
They create problems that they cope with because their brains don't work in the same way as ours. We suffer from stress and anxiety because we are living in the real world without the benefit of a not caring attitude. It is hard work pretending to be normal in everyday life and trying to look as if everything is going ok in the outside world. People only have so much patience when it comes to talking about how it all affects you and expect everything to be ok after a certain length of time.
I send you a big hug and wish I could make your kitchen problems go away.
Good morning Sian - I hope this will help some. My husband had Encephalitis at age 3 1/2, and because of a tremendously high fever - 1/5 of his brain burnt up. I married him in spite of everything in 1999. It has been such a battle at times, because he sees everything through distorted eyes. He is full of arguing and dogmatic, about every subject under the sun. I'm a Christian of over 48 years, and I do want to stress that only this has kept me from going nuts so many times, because when he makes no sense at all, or throws tantrums, I can take all of it to the Lord in prayer, which turns it all around, and makes it bearable. We who go through all this know it is a very special kind of daily trial, that others can't usually relate to. I have prayed many prayers for him, down through the years, and know he can be healed, if he would only believe. I was healed from Angina in 1982. Every time a doctor tries to tell me there is no healing for that - the EKG stops them dead in their tracks ! they are just left shaking their heads (probably don't believe I ever had it) I find that simplifying everything I say, and speaking loud and slow helps a lot, because he pays NO ATTENTION to anything anyone else says - EVER ! it puts an end to the stream of "what?" ,"huh ?" to every word I say, and that can frustrate me up a tree. Well, hoping this helped -will be praying for you and him.
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