Friday, August 20, 2010

The information I was given ~

Much of the explanations I've received from Rob's care Team have been likened to MS. I imagine it's easier for them, and for me, to have it put into a perspective that I can relate to. Not that TBI is too far off from MS. Both are neurological and affect everyone in different ways.
Like me, Rob can have a "good day" followed by a "bad day." Unlike me, Rob's "bad days" will not increase the severity of his injury, which is good.
His Team seemed to be understanding about how devastating the visitation restrictions can feel. What they told me is to renew myself, work on the to-do list I have for our residence, and respect that the visiting restriction is necessary for his Care Team to do their jobs. I was told to explain the weekend visitation restriction in the same manner - that it's in Rob's best interest and an important aspect of his rehabilitation.
I spoke with Trooper Hunt's supervisor at Troop D yesterday regarding the accident investigation. Due to the serious injury Rob sustained, this investigation may not be complete for at least 6 months. Property damage claims, and any other insurance claims, will not be able to be paid until that investigation is final. They apparently need to do full scale reconstructions of the accident scene, and they need to conduct an interview with Rob. No, he won't remember the accident, but it is a requirement on their end to see what, if anything, he can tell them about that night. I think they're trying to catch him, to be honest. It was alluded to that Rob didn't take evasive action to avoid the accident. I think they want to know if he remembers leaving home, and possibly stopping somewhere on his way, which would have caused him to be running late. I'm HOPING our attorney will be able to be present for that interview when it occurs.
Now, one good thing is that "medical issues" are no longer a primary concern for Rob. The emphasis has shifted to rebuilding skills so Rob's able to enjoy the highest possible quality of life. One thing his Team is preparing both of us for, is that Rob may not be completely aware of how his injury will impact his life until he tries to perform familiar tasks. They said he could become very frustrated when he realizes he's not as good at something he used to do well and will need to be provided a lot of support to decrease his frustration and increase his motivation. Rob will need to be praised for good performance to enhance his self-esteem.
I was also told that I should begin to file for SSDI benefits for Rob. :( Even if Rob is able to return to the workforce, they told me it makes more sense for him to consider working part time, rather than full time. Just as with MS, fatigue is going to be a big problem for Rob.
Rob's outcome may not be known for several months, or even years.
There's never going to be a "fix", so I've been told to help counsel our children that, together, and in time, we will accept what we cannot change. As Rob always says, "It is what it is." He always said it to me when I was upset over something MS was taking away from me, and now, we'll all be saying it together.
Life goes on, but the human spirit can move mountains. More so with God's direction, guidance, and backing. "Two are better than one, because they have a good reward for their hard work. For if one of them should fall, the other one can raise his partner up. But how will it be with just the one who falls when there is not another to raise him up? Moreover, if two lie down together, they also will certainly get warm; but how can just one keep warm? And if somebody could overpower one alone, two together could make a stand against him. And a threefold cord cannot quickly be torn in two." (Eccl. 4:9-12)

5 comments:

  1. so when, if ever, will we be able to see our brother? I know it's not you, but this is getting rediculous. he has a BIG family, we all want to see him. I can't imagine sheltering him from his family will help his progress either. Maybe us siblings should talk to his care takers as well, because we are all just getting pissed off being told we can not see Rob, when a few days ago we could.

    ReplyDelete
  2. Beth,
    They've told me I can't see him at Traurig House, too. I was told all along that visitors would be "welcome" when he's there, but as soon as he got there, it turned out not to be the case. That just about killed me! I've been with him every day for the last four weeks.
    I saw Rob shut down when he had visitors in the hospital. Dad came. Then Stan and his wife. Then Mike and Curtis. By the time Mike and Curtis were there, Rob wasn't doing a lot of talking. When they left, I asked him if he was overwhelmed by everyone visiting and he told me yes.
    You can look into the information that the Brain Injury Association of Connecticut has regarding this limitation. I looked it up for myself, too, because I was about to not let him stay at Traurig when I was told I couldn't visit.
    This is hard for everyone. It's wonderful that Rob can have some "normality" by visiting at home for the weekend. His care Team explained the rules to him before he left, too, and he understands. He knows everyone wants to see him. He's doing really well at home so far. He's the one who told me we needed to stop by the office at Traurig to get his medicine before we left. He packed everything he needed to come home. He's really doing wonderfully.
    The ride home was very taxing on him. His vision was really messing with him, so now he's taking a nap on the recliner with Mei-li.
    Please rest assured that Rob knows he's loved and missed. These are not my rules.
    Rob will be home soon enough and everyone will be able to see him. It puts a lot of stress on me to have to keep everyone away. I hate being in this position and I'm really sorry. I don't know what else to say about it. :(

    ReplyDelete
  3. I do not want to put it this way, but think about Nate. Overstimulation is a problem. People with neurological diseases have negative responses to overstimulation. Not that Rob will 'never' be able to see anyone again, but it has to be taken slowly. Only Rob knows what he can handle and when. I told him on our way home that if we WANTS to see someone, we'll see what we can do to arrange it. I just can not leave an open invitation for everyone to come to our apartment this weekend and bombard him. It can be devastating for him and that's definitely not what I want for his first weekend home since his accident. I hope no one else wants that, either.

    ReplyDelete
  4. you just do what you and the team think and know waht is best for now and take one step at a time. i know everyone is anxious....that is a good thing...we all love rob and want him to get well as best and fast as possible.

    ReplyDelete
  5. Crys, I think it is great how you're sharing Rob's progress. I bet it would help him to have family and friends keep mailing him cards and pictures. That way, he can "visit" by correspondence until he has the stamina to visit in person.

    ReplyDelete