The services, since they see him everyday, don't tend to take notice unless it is so big, like when he fell flat on his face and busted his front teeth, that blood is spewing or Paul is unconscious etc. This is the downside for everyone. I come from a very proactive stance and I dislike (its one of my pet peeves) reactive approaches. That is why I am extremely diligent in maintaining contact each week and offering insight and asking questions as I feel they are needed.
I know the services deal with more than just my brother so my proactive position allows me to get ahead of Paul's body giving out completely when something big is happening within his brain and his body. He is 51 this year, however his brain is more like 90 and his body is wheelchair dependent...aka he has lost a lot of strength and the ability to truly take care of himself.
As a guardian, I have to make decisions for Paul when it comes to everything health wise and legally. So, I watch, listen, read and have numerous conversations with doctors and care givers in hopes to make the best decision possible for Paul. While doing this I also need to talk with Paul in simple language so he understands and so he can let me know what he wants. I do this when no one else is in the room with us as their opinions tend to influence Paul.
Yes, it is true that I have my own preference, however I do the best I can to present all facts. This looks something like the following:
Me: Paul we need to decide whether you need surgery.
Paul: Surgery? For what?
Me: Your foot (as an example).
Paul: What's wrong with my foot?
Me: You cannot move it so you can walk.
Paul: What's that? (pointing to something on my chest...a game he plays)
Me: Paul, can you walk?
Paul: Ya
Me: let's see ok?
Paul: Ok (he gets up and we walk a bit noticing that he drags his left foot and cannot put full weight on it...we then sit down)
Me: Paul is it difficult to walk?
Paul: A lil' bit.
Me: Do you want surgery to see if it can help?
Paul: I dunno.
Me: Does it hurt to walk?
Paul: A lil' bit.
Me: Do you want to see a doctor about fixing your foot so you can walk?
Paul: Why?
Me: Because you are having problems walking.
Paul: When?
Me: As soon as we can get it scheduled.
Paul: Grrrrrooooowwwwwwlllllllll
Me: Is that a yes?
Paul: Ok
I struggle, as do his doctors and caregivers with knowing exactly what to do for him in these types of situations. It is then up to me to make the final decision.
I have to look at the long-term as well as the short-term for what is truly in Paul's best interest on most everything.
His services deal with the short-term and immediate concerns hence why they tend to be more reactive and less proactive.
Doctors tend to look at costs vs benefits in the short run although we have been given a blessing with his PCP Dr. Lindley. He is extremely concerned about the long run for Paul and his life.
After a conversation, like the one above with my brother, he and I are wore out and his brain goes to those things that bring him comfort. I found that to push the issue causes him great distress as he honestly doesn't know and cannot understand all of the conversation. His TBI will not allow that for him.
It's scary to be your brother's brain and decision maker. I have had no children to practice on or prepare me for this Parental role. I accept it is my responsibility and I take it on gladly for Paul. I am thankful I have my Father in Heaven and Savior to be my confidants and guides. They also send the Comforter to me and to my brother so we can get through all we need to as he ages and for all the things we have gone through.
I remember the saying "Courage is not the absence of Fear. Courage is still doing what needs done in-spite of the Fear." (I think I paraphrased) LOL
My experiences have taught me to be PROACTIVE and to Listen and Pray. The answers will come.
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