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.

do i stay or do i go?

2013 Brain Injury Awareness Campaign Bracelets
I have been working on getting bracelets for this years campaign {a little later than i usually start and June is right around the corner} and today I was talking about 2 different companies to deal with and Dennis made a comment that really struck home for me. He asked if that locally am I really doing any awareness? is it all online? most of last years bracelets (2500 of them) went to other places than Canada. The local Brain Injury Assoc. and groups dont seem to really help with spreading awareness. One association actually told me they would help and we would charge for the bracaelets. That is not my intent with getting awareness out there. I feel we need to spread the knowledge then we can try to raise funds.
The last few years I have purchased and personally mailed out my bracelets. I have made wonderful friends and connections to people but most of them are 100's or 1000's of miles away. I  do not charged for the bracelets and I also mail them out on my own dime. I DO think we need to educate the public to get them to understand about  Brain Injuries! So along with my bracelets i send out a letter with a bit of our story and some actual, AMAZING BI FACTS and I challenge people to educate themselves about BI's.

But this year I ask myself  "do i continue with bracelets or do I just forget it and let it go"?  I know lots of people think I do this just because of Sam and because he is not 'the norm' {whatever that is in the brain injury world} why bother anymore? Those people are partly right in that I started this awareness campaign becaus of Sammi. I started it because i felt i needed to help people to understand BI's. I needed to be able to talk to people who possibly knew what i was going through or understood my frustrations of people being un-educated about BI's .... but the last few years it has been more because of my dad. He is what most people assosicate BI's with... someone who 'looks' like he 'should have a brain injury'. He is a quadriplegic, he doesnt speak much and when he does it is muffled, broken, inappropriate {and usually heartbreaking for me}, he can not feed himself, he is incontinent and he has the mentality of a 7yr old or less. I do the bracelets for my daddy. I want people to know the reality of BI's, the reality of the silent crippler and the reallity of how it affects the lives of not only the survivor but the family and caregivers too. i want people to know about ambiguous loss and how it feels to sit and watch your loved one slip away from you bit by bit, day by day. to know how it feels to have to sign a DNR every year at the personal care home yearly care meeting.

That it is hard to watch is a given,
that is is hard to live this life is a given
that we should have to do it alone is not.
That we should travel this journey with out understanding from the world is not.
I want to help people to navigate this life with someone in their corner whom they can talk to and know that they will not judge or ridicule.
I want to educate the public to not judge or brush off BI's as a non-issue.
I want people to not be afraid to ask about BI's and to arm them selves with information about them so they are knowledgable about the basics  if it should ever happen to them or someone they love!

So i think i just answered my own question about whether or not i should continue with the bracelets...

i guess the bigger question is what do i do to get it to be more local (town, province, country) to get more awareness out there?!

Any ideas?

{i am getting a headache already! :-D }