Jared has been dealing with progressive cognitive decline for over 5 years now. His stroke in October of 2009 sped up the process. He’s made big improvements in some areas over the past two years. So why did the reality of what the neuropsychologist was sharing seem so unbelievable?
We sat at the Traumatic Brain Injury clinic at Fort Hood two weeks ago while the doctor reviewed the findings of his testing. Jared had previously undergone hours of testing in 2009 and when we heard those results they were so scary sounding. He shouldn’t drive. He should file for disability. He may have mad cow disease. He could be crippled and dead within eight years. He should not care for his children unattended. I need to get power of attorney and he needs to turn over his rights to make decisions to me.
Well, we scoffed at some of that info two years ago and within two months he had a stroke and was permanently disabled. So now we sit and once again hear a recommendations and my head spins. Once again he shouldn’t drive. Don’t worry he doesn’t and hasn’t since his stroke. He shouldn’t engage in dangerous activities such as standing on a step ladder or using power tools (when did a step ladder become dangerous?). His spouse will need to be present when receiving medical feedback. He will require the assistance of his spouse with medications, finances and legal documents. No unsupervised caregiving to his children. It was this last one that took me by surprise. The patient and his wife should seek the assistance of an attorney to plan for his welfare and the custody of their children should his spouse not be available.
Okay, I do realize that I will die and who knows when. Yes, we already have a plan in place for our kids if we die while they are our dependents. Why did I not even consider me dying before Jared? Perhaps because he is the “sick” one? Thankfully I have a brother-in-law who is willing to take on my whole crew if necessary…including Jared. I felt so blindsided by reality.
It was hard to hear the test results although I live them everyday. I sometimes “forget” that Jared is significantly cognitively impaired because he can be so “normal”. There is an aspect of this report that is frightening and yet another aspect that is comforting. Why is it comforting? It helps me to realize that he really can’t change some things and it makes me more understanding of him which makes things better all around. When I accept he is disabled then I am more apt to quit kicking against the goads.