Hi Coug70_99
I'm not a medical doctor or anything medical. But i was a wife in a long term marriage (26 years at the time of diagnoses) with a husband with some outcomes that were similar to your husband's. Know that you aren't selfish. You are physically, emotionally and mentally worn out. This has been a long, complicated journey for the both of you. Your comittment and love clearly shine thru your posting. It's hard trying to find the right direction, when there are no road maps, "just is" because the answer. It's easy to get lost in the bigness of the situation.
The first thing that I would do is set up an evaluation with a different neurologist. First create your own problem list. Draw a simple body shape, then divide it into sections. List problems related to each section and take this in with you to the evaluation. Be sure and include both the physical and emotional stuff. The neurologist will be able to sort the problems. He/she may not be able to tell you the cause. but there is great peace in knowing that there is a reason why things are the way they are. It'll also help you to focus on the issues that may be treatable. On the worst days it helped me to remember that his actions were rooted in a medical condition, rather then in his not caring. A neuropsychological evaluation might be useful to better quantify his neurocognitive impairment. With brain injury there can be changes in personality and mood disorder. All of this can be sorted out thru the evaluation.
keep track of trigger points that may contribute to his outbursts. I noticed that if my husband became fatigued,
around to many people, in a new enviroment, or dealing with a situation that became stressful he was more prone to outbursts.
On a "good day" share with your husband how his actions makes you feel, then set up boundaries. As an example when he became to arguementive , in your face kind, we agreed that I would remind him that he was crossing the line and that I would discuss it later after he had a chance to cool down and rethink things. Once removed from "the moment" he shared with me that he could see how he had gone to far, but in the moment it was never anything he could see. There was many a time when I had to leave the room.
With so many losses I am guessing that your husband is feeling"less then". That you deserve better. It's also a guess that somewhere along the way he has become emotionally dependent on you. One of his biggest fears may be that you'll leave. You have been his safety net, the one he feels the safest with. That's why you see the "worst" of him, that few others see.
Everything isn't "your fault". Again this stems from the medical issues, including the forgetfulness and hearing loss. You have done the best you could under complicated conditions. You have given, and given. Sometimes we fall into the rut of "if only" if only I did ------. then things would be better. You have done the best you could, with the information that you had at the time. Please take the time "for you". you're running on empty right now.
Do things for yourself, kept doing the things that have interested you. Take time out to be around other people.
Consider counseling. (boy, it helped me to sort things out) at the least you need a safe person for you to talk to, to share with. Make sure you "have fun" don't allow yourself to leave behind your joy.
Consider attending a support group meeting for ANer's. You'll meet other spouses, while they're journeys are less eventful I am sure that you will find support and understanding. Meetings are a valuable source of information and who's who in the AN world and could help give you direction in finding doctors that will be of help.
Contact you local Dept on Aging. These people know everything!!! Given your husband's situation it's very likely that they would come to you. These guys could assist you in your areas of greatest need. (Like maybe getting someone to come in and fill in as a caregiver, so you can have a break) There's a wealth of programs out there that could help lighten your load and these people would be the ones to know. It'd be worth a phone call.
Know how valuable and special you are. Not everyone would do what you have been doing. But to continue you must take care of yourself. Make this a priority. Do something for yourself today.
Please feel free to email me thru the forum anytime. Just click on the icon below my name. Know that we are all here to support and to walk along side of you.
Hugs and love
Raydean
