Saturday, March 31, 2012

Open with his injuries

I talked to Dean today about playing around with the idea of being open with his not hide them anymore. He has such pride and was raised by a generation that taught him that to show weakness or vulnerability means you are prey and will be attacked. I think, though, there are only two options: 1) People will think he is weak and unable; or 2) People will think he's a liar and faking it. Either he shows people or he hides it. He does see the wisdom in being truthful and letting OTHERS' behavior be unjust if it's going to be.

Only his children and I know the truth about what he faces day to day. Trying to describe a brain injury to folks that have no idea is hard....but I'm going to give it a shot.

  • He cannot walk and listen/talk at the same time. He spends all of his brain energy on making sure he doesn't fall down...with his dizziness and his weakness in his leg(s) and his back being so sensitive to any misstep, he has to concentrate on each step. When he listens to someone, it takes lots of concentration to decipher their words and place meaning on them, trying to make sure he gets the correct meaning they intend. Since usually people talk too fast, he misses half of it and gets very overwhelmed. If he is being spoken slowly and patiently to, he can understand after great concentration and then he has to formulate a response. Finding the right words is sometimes like pushing a rope for him and he gets very frustrated.

  • He cannot remember things like what motivates him in life. We have endless conversations about his goals and how to achieve them, he gets excited at the prospect of success, and then 15 minutes later he forgets he has goals and feels like his life is spinning out of control. He can't remember if he ate, what he ate, that he poured a drink. He can't remember from the time he gets up from the couch and walks into the kitchen (5 feet away) that he went in there to take medicine. He forgets appointments and plans. When he's driving, he forgets how to get home or where he is. Holding onto memories are like trying to catch wind for him and he gets very frustrated....but thankfully with memory loss, he forgets that he can't do it well and he can get a little peace.

  • The things he does remember, he has no "depth perception" to. He can't tell if a memory happened 5 years ago, 5 months ago, or 5 minutes ago. He thinks he knows something but can't rely on when it happened. He can't even rely on whether it was real or whether he was just thinking about it or dreamed about it. All of his memory problems make it very difficult for him to answer questions which is why I accompany him to every important meeting or appointment. He really cannot answer questions or handle the pressure that people place on him to respond.

  • He needs more sleep than the average person, between 10 and 12 hours. He has still not mastered waking up at a predictable time. This makes it very difficult to make any plans with people. At night he takes medicine that could knock out a horse and so past 6:30 he's going downhill fast. By 10 pm he tries to be in bed....but the next morning....all bets are off for predicting when he will be awake enough to get up. Each week there are two or three days where he can't get out of bed due to a migraine. Sometimes taking his Imitrex helps and sometimes it doesn't. Again, that makes it hard to plan things.

  • He has balance problems and hearing problems. He often doesn't hear what someone says and/or cannot tell if their words are directed toward him. He often needs to hold on to things to walk.

  • He can't read body language. When people make the gestures like they need to get going, he will not recognize it at all. When someone incinuates things, he will not get it. It has been a challenge for me to learn to be direct all the time.

  • He is able to perform at about 1/3 capacity of everyone else. What would take someone 20 minutes to do, takes him an hour. When he's been out in the garage for 6 hours, he completed a 2 hour project. And time slips away from him too. He doesn't really know how long he's been doing anything without being reminded which he then forgets.

  • Stimuli, especially noises, are too much for him if they happen more than one at a time. It takes his brain too much energy to decipher the importance of each of them and he cannot seperate his attention between them.

There are many more things....but these are on the tip of my mind at the moment. About some of these things people will think or say "oh ya, my husband's like that too" or "all men are like that". Dean was not like any of these things before Afghanistan! That's all the matters with a brain they were before vs. how they are now.

Taking care of him requires my full attention to be on his actions, plans, and needs, etc. It is a full-time job!

Things you can do when you know someone has a brain injury: talk slowly (not in a higher pitch like he is a baby, just s-l-o-w-e-r), feel the energy you bring to the conversation and calm it down 10 pegs (about as slow as you feel when you first wake up in the morning), and be patient.

Wednesday, March 28, 2012

A bad day for Dean

Dean is having a bad day today. He is uncoordinated and keeps dropping things and can't walk a straight line so is holding on to things. He says that when I talk it sounds like jibberish non-words and he has no idea what I'm saying. I feel so bad for him on days like these.

These days are when I feel like I don't know what to do about all the family and friends who don't have a clue what our life is like. I think of the uncle who doesn't know why Dean doesn't ever come around but "seems fine" when he talks to him on facebook....or the uncle that asked Dean why he is limping. I don't know what to do. Do I send out some memo letting everyone know how hard things are for Dean? Or do I let it go and just counsel Dean on ignoring their words? He feels pressure to look normal when he's around people while not understanding their fast firing words and not knowing how to answer or respond to their barrage of questions and comments. He feels like he's the plane crash and doesn't want people gauking at him so let's leave it alone? But at the same time he wants some patience and understanding. So what should I do?