Would appreciate insight, advice about my husband

[sockmonkey]

Hi,
I am brand new to this forum. I found you on Twitter today after searching for a good site for quite some time. My husband is a brain injury patient. He has had very severe epilepsy since a child and has been very heavily medicated for it for most of his life.  About 12 years ago, he had a lesion removed from the left frontal and parietal lobes. The lesion was very long and deep. The doc's removed as much of it as they could detect and safely remove. After the surgery, my hubby had to relearn how to do everything.  Although his seizures are much better, the combination of seizures, meds and surgery have really affected his language, behavior and mood. I think he is getting worse and it is really affecting our family.  Our sons don't want to be around him, the stress he gives me seriously affects my health, and he is unhappy himself.
To compound the problem, our two sons (they are grown, but still at home) and I have Aspergers disorder, a form of autism.
Here are the problems I am seeing:  My husband is very negative. He complains ALL THE TIME about everything. He doesn't talk to anyone accept to tell them what to do and also to complain.  He has a very hard time with language, which I think is getting worse.  He understands only about 1/2 of what he hears. He misunderstands and misinterprets what people say and their attitude in saying it.  He uses the wrong words all the time and then gets angry when he is not understood.  Sometimes he just says gibberish--sounds that are not words. He has a very poor short term memory.
I know that all of these are typical of a person with injuries like he has had.  But why is it getting worse?  How should I and our boys interact with him that will be positive and let him know that he is appreciated?  I want to treat him as an adult, but he shows some very autistic behaviors, like perseveration, and I have to be blunt and sometimes harsh to get him to stop.  I don't like to do that.
Please help! Any and all thoughtful advice will be very much appreciated.
Thanks very much.
Nancy

[savingthebrain]

I haven't experienced brain injury compounded with Aspergers.  Am I understanding it right?  That your husband has aspergers?... or your sons?

Anyhow, I first want to make sure someone is seeing your husband. I hope the worsening symptoms have been evaluated by his doctor and are not caused by a developing underlying problem such as a new lesion.  Also, maybe his medications need to be readjusted.  Talking to his doctor might do the situation a lot of good.

Aphasia is very frustrating for both the patient and his family.  Be extra patient. Give him time to say things.  Give him time to process things also.  His brain doesn't work normally and needs time to understand and form words.  Also help him communicate easier (pen/paper, pictures of things he frequently needs, etc).

Perseveration is uncontrolled and unintentional.  Medications can help.  Setting limits can help sometimes, but isn't as beneficial as distraction in my opinion.

[sockmonkey]

Thanks very much for the reply.  My sons and I all have Aspergers.  I do believe that my husband does, also.  He has always been very quirky.  He has shown more autistic-like behaviors since his surgery.  He is seeing a doctor and was tested last year for memory, language, etc.  But the doctors are not very good at listening to family, especially wives.  This particular doctor also said that autism cannot be caused by brain injury.  He is dead wrong about that.  So I don't trust his evaluation that nothing is going on with my husband.
The kids have noticed that his language is worse and his behavior is worse. He does not have the patience and self-awareness to take time to communicate or to let us take more time with him.  He is impulsive with his interactions, can't follow his own conversation and usually assumes that what we say is negative.  It is really driving us crazy.  Of course, he won't admit any of this.
If he says "door" when he means to say "window", he gets upset when he is misunderstood and puts the blame on us, not admitting that he even misspoke.
This causes a lot of havoc and hard feelings in the family and I am not sure what to do about it.

[Ric J]

Aphasia is my problem/issue and it comes and goes. And the worst thing is that it's hard for me to even notice it happening, which makes me think that the person I'm talking too doesn't understand me or doesn't care what I'm talking about. My family gives me a wink when they hear me missing or using the wrong words, which make me understand to try again. At work I write a lot of notes during meetings to make sure my "aphasia" issue is not a problem, the people I work also understand to give me a wink or quizzical  look. My wife knows that if I didn't talk much at work or I'm tired/sleepy my aphasia is "worse".