The present date is September 26, 2011. The journey so far has been one of many ups and downs. No one or nothing can prepare you for what happens with brain injury recovery. At the time, when your loved one is hurt, almost dies, lies in a coma, battles infections...then begins to wake, and learns all his own vital functions and daily needs all over again....you think this is the worst part. This is your nightmare. And it is indeed a nightmare...but I've come to learn that it does not compare with the daily task of caring, guiding, teaching, coping with and living with this "new" and different individual.
Life has become a daily span of 24 hours, with a need to "set" an attitude in the morning, and a goal of reaching bedtime with as little drama, confusion or chaos as possible during that day. There were several months of very extreme confusion, Danny almost in a "zombie state", and each day was a revolving door of trying to get the proper medications into him, often against his will, getting him to and from appointments while dealing with extreme behavior, helping him to manage his hygiene, his continence, his eating. He was lost in his own "bubble" of memory loss. He confabulated all day long, which is when a brain injured person tells "tales" about all sorts of things...not purposely. It is a result of all the shuffled and misplaced memory files coming together and mixing up, plus the fact of not having true and clear memory about facts...the brain sorta just "makes up" its own versions of what has happened in the past and what is occurring now. Basically one might call them delusions.
As the months passed we had some breakthroughs with memory, some of it returning more and more, and some realizations between what was true and false. Thinking became clearer and Danny ever so slowly was appearing more "normal." This normal appearance showed outwardly to others, but they werent and arent in his therapies with him...living daily with him, listening to what he really felt or thought about himself and the world.
Danny's predisposing conditions, his bipolar and OCD, began to be magnified as well, and at present, even after many medication adjustments, are rearing their ugly heads.
As of right now, I find myself at a point where I am not sure I can continue to deal with the plate set before me. God knows I love this man with all my heart, but things are not good. Oh we have good days, dont get me wrong...in fact all in all, except for a crisis every maybe 3rd day, our days are manageable. But there are days when I fear for him, for myself...days when he seems so out of context, and can be so very arrogant, disruptive, chaotic....annoying....and it has caused troubles on the home front. It becomes a question of whether it is fair to affect my family in this way. I am full of confusion.
Danny as of late has been expressing the thought that he is "giving up." He is bored and depressed. He is saddened that he is being "told" he cant work or drive. He is angry that he has welding school under his belt, and war time service in the military with training there as well, and now he is being rendered "useless" due to his brain injury. Yet he is refusing to perform the exercises therapies teach him for memory repair. He is in denial that there is anything wrong with his memory, even when its clearly shown to him daily that he cant recall even the day before most of the time unless I give him such blatant clues that I am almost giving him the answer.
Through the Pennsylvania Head Injury Program, I am working on getting him admitted into a residential facility that his neuropsychologist says is necessary now. It could be stay of anywhere from a few weeks to a few months...but he needs to move forward and he is not doing that anymore. I've done all I am capable of doing...he needs to be forced to do for himself or he isnt going to get any better. My heart is breaking over this. There he would receive intensified treatment by therapists, and be taught independence. As it stands now, he depends on me for EVERYTHING. He won't get anything for himself, or do things for himself. He won't initiate his own bathing, schedule, medications etc. He refuses to use the calendar to track his daily activities. This needs to be changed, and I believe by getting him into this exceptional facility, we have a stab at least of turning this thing around. And in addition, perhaps with their expert staff, they can figure out the mess his meds have become. His case is so very very complicated with the disorders he already had and then a brain injury on top of it. His doctors and therapists dont know what to do or say anymore. Its time for action. Recovery levels off at the one year mark. It is frightening to me to realize we are 10mo. post-injury and after that things will progress slower, or possibly barely at all.
The love I felt as Danny lie dying, and recovering, remains still as strong as it ever was, but as happens with all brain injury, slowly your outside support and help fades away, and you are left with the devastating reality that this doesnt go away...and that if you really love this person, you must fight for the best you can get for them. I feel I've done this...given my all. I also must face reality though too, and realize I can only do so much, and that I can't allow this to overshadow the welfare and family health and structure of my own children. This is a terrifying realization.....