I simply love when, after being persistent, putting the time into making contacts and follow through, how wonderfully things come together for my brother and his services!
My time in Missoula last week was very productive. The Semi-Annual meeting between Case Management, Opportunity Resources Home Services, the nurses involved, Paul and myself went very well.
Communication has gotten to the point that everyone was ready to move forward for the next 6 months with Paul's care and life.
It was absolutely wonderful to have the Case Manager actually ask Paul what he wants to see happen with his services. Paul loves the Msla Osprey and Mavericks (Baseball) for the Summer and the Grizzly teams come Fall. He also has two main care givers that are extremely active and communicate with Paul about what he wants. I saw an improvement in his ability to speak and form words. This, sadly, was a frustrating thing for Paul and those working with him over the past couple years. He was losing the ability to speak complex words with more than one syllable. So he resorted to one syllable words such as:
"Just Kill Me!"---in actuality he was not happy with his old, rickety and unstable wheelchair and it took 8 months to get a new one...since end of February this particular comment is no more. But he said this to try and communicate with his caregivers that he was scared and worried about the old chair but couldn't get them to understand so he shocked them into talking more about it.
or
"Not sure"---when he doesn't understand the question(because it is too long...too many words or ideas)...this is more the care givers issue...I have coached them when I see them and on Therap as to how to ask simple, clear questions that require less complex thinking but gives Paul a couple choices...then repeat so he understands. This assists him in being able to make those day to day decisions he needs to make as a man.
or
"I'm scared"---Ok now this one upset me the most. Somehow, during the year I was not the active guardian my brother became afraid of walking, talking, doing something new, and simply afraid to live his life.
My superhero brother who conquered a wreck and injuries that altered his life to the extreme but still had the attitude that he would conquer all and his life wouldn't be limited, now was.
I account this to too many changes in personnel and the ability to take care of those basic life-care issues. Having family members freaking out (in front of Paul) because the services were not doing their job consistently or to the needs of the client, only tended to freak him out.
Sometimes, as we try to compensate for Paul's TBI, we over communicate and this confuses him to the point that he feels what you are feeling (frustration, fear, concern, sadness etc) and after several months of this happening he simply shut down and accepted the wheelchair and limited life...although it was not what he wanted or needed. He acted out more and got more violent and withdrawn.
I saw this behavior in February and even a bit in April.
However!!!!!
Last week I saw my brother re-emerge into his life! Working diligently with his case manager, ORI supervisors and staff, and the day services staff Paul was brought back into his life decisions.
It began with organizing his pantry and establishing a menu plan for his meals, where Paul decides what he wants to eat. (very simple)
Then working with his day to day staff on establishing boundaries in their interactions and helping them understand his TBI and how it affects him. This helps them understand Paul more. Meta and Gene are fantastic! They love their job and truly feel Paul needs to get out and interact in activities outside of ORI day services and his apartment. He gets to go to art shows, car shows, movies, pool therapy, bowling, dinner with his friend Micki, and when home they actually play the games he has on hand. (keeps his brain connecting long term memory to the here and now)
As I encouraged and coached the caregivers, I saw them take the reigns and establish some pretty amazing relationships with Paul. They have grown and to actually see them with a more pro-active approach to Paul's caregiving needs, (considering these type of services tend towards reactive positions)...this is simply amazing. As his sister (and guardian) I am filled with gratitude for the gift my brother is and how his services are a wonderful gift to him.
It is so sweet and inspiring to see my brother again...after 4 years of hell, confusion, fear, worry and fighting every time I went to Missoula or dealt with those entities working with my brother and his care...not to mention fights with the other guardians over what is best for Paul.
I am very thankful to my Savior for the ability to forgive and a Father in Heaven who understands us and still loves us...in-spite of our imperfections. I have grown through this process although it was very, very painful at times. Learning to forgive and communicate more effectively with compassion (becoming more like the Savior) humbled my fear and frustration and allowed me to be patient so when I needed to step back in I could from a better place. Tongue in cheek...The blessings just keep coming (lol actually it is true). The Lord allows us to make mistakes so we can recognize our weaknesses so HE can make them strong. Again, isn't it amazing this gift we call life. In this case my brother's life...a true gift from God.
