Thursday, May 7, 2015

stuck in this cycle

Some days I can write an entire post in my head of life these days and then when I finally sit down to get it done, there is nothing there. All the frustration and issues we are dealing with can't seem to form into words... I feel crazy at those times... this IS one of the times.

From our BI Meeting ...
At the beginning of the week we went to our monthly Brain Injury meeting. It starts as an everyone in meeting, where we introduce ourselves, talk about up coming projects or issues then we break and go to our "specific" meeting for the final hour. Going to these meetings are as much for Dennis and I, as caregivers, as it is for Dennis and Sam as survivors.... Yes you read that right. Dennis will go to either session depending on how he is feeling, or where his biggest need to be is.

This month, we had a speaker come and talk to the group about spiritually. Not religion, but spiritually, and how this relates to us all when confronted with issues, people, events, etc. Joe {the speaker} described it kind of like the 12 step program. He jotted on a board {see picture}the different stages we go through and described what may go through our minds... It was a big eye opener for me to see how the past 20 years with my dad and 7 years with Sam have affected me and how I am dealing {and redealing} with things.  I will be doing some serious soul searching in the next while about these issues to see if I can get past them ...

Which brings me to the second part of our meeting where the caregivers get together. I struggle with this part of the meeting because A) my dad is so severely injured and never makes progress and its hard for me to identify or ask for help on how to deal with things B) with Sam, he is the youngest person In the group (there is another person of his age but they don't come to the meetings, but their parents do) so I struggle again with not being able to identify C) most in the group have some form of 'help' via doctors, MPI, social workers, mental helath workers ....
We never received any help even after we left the hospital. More of a 'don't let the door hit you on the way out'. I did all Sam PT and OT on my own at home. We never have had a neurologist or ANY mental health help, except for when we went for family counselling 2 years ago because of issues with Isaac. 
Listening to other caregivers and the help their survivors get or have gotten in the past was like a slap in the face on Monday. All I could think was "I should have done more to help Sam get the help he needed" and "what did I miss that would have helped him then and would benefit him now". Now he could use the extra help or maybe at that time they could have helped him to get through issues that he is going through now -- basically Sam is about 2 years socially behind. He behaves more like a16-17yr old than a 19 year old. He lives on his own, works with us in the morning, but his afternoons are spent hanging back at the school, he can't seem to have an opinion on anything that relates to his future, he stresses out easily, his sleep is not good... I could go on and on.  He is still in denial about his injury it seems {sadly unless he is joking about it or using it to impress someone}.

I found the above post that I wrote a few months back and never posted it for some reason... so I will continue it from here: 

Things have not really changed since my previous writing except that Sam has made a few changes to his daily routines and they are for the best, but there is still work to be done. He doesnt spend time at the school anymore, he has his pigs and chickens now so there is something to keep him excited about gettin up each day. There is no chnage tho in his denial. He snaps at us for trying to help and that stresses me. But then lots stresses me i guess.




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