Saturday, June 16, 2012

What's it like to have a brain injury?

And what is it like to live with someone who has a brain injury??

I am a born sticky beak so have been very curious to know what it is like for Murray to have a brain injury.  I know what it's like to live with someone with a brain injury - but what is it like to have one?  The thing about brain injuries though is that it can make it hard to put into words what it is like!

So far the main word Murray would use to describe it is FRUSTRATING.

He says it is frustrating not knowing things that you know you would normally know.  Not knowing what is happening from day to day, not knowing where we are going, what we are doing, how to get to where we are going.  Also not remembering people's names or things that people have told him.

It is interesting that that was his response - because I can tell you that that is the word I would use to describe what it is like to live with someone with a brain injury.  It can be incredibly frustrating!!  The day to day forgetfulness doesn't bother me so much - I'm pretty good at laughing some of that stuff off (example - yes you DID ring your mother for her birthday and NO I'm not just saying that to shut you up).  There are many behavioural problems that can result from a brain injury - Murray seems to have escaped most of them thankfully - except for difficulty with initiating tasks.  He really doesn't initiate anything on his own and is reliant on me to prompt him for most activities.  Seriously that one is driving me bonkers and I am really struggling to be patient and supportive.  Especially as he doesn't seem to be aware that this is a problem!

I didn't know whether to put any of this on the blog - I'm not writing any of this to criticise Murray in anyway - he can't help it but I guess I want to be truthful about what is going on. I get a lot of support from the blogosphere - you're like a little cheer squad in my computer!  I don't want to pretend that everything is fine when it's not - I need you all to cheer me on as this is not easy!  It would be easy for people to think "Oh yay, Murray is home.  Everything is going to be OK now" whereas the truth is very different.  Yes we are very glad to have him home, but it is also now that we have to face the reality of a long, slow recovery process.  We would really appreciate your prayers!

6 comments:

Gina said...

Wow that initiating (well lack of) things is interesting... so easy for him to slip into a passive role. See if you can get some electronic scheduling happening for him for tasks you know he can handle, can tick of a list and save you from doing everything. Use his phone and scheduling type apps to get him on task so you aren't doing the asking ALL the time. Make sure you have help from the BI support groups (if there are any) too. You have a lot on your plate so keep asking for help. Big hugs & love to you xxx

Deb said...

Thanks for sharing it with us. I was guessing there was still a lot of ongoing recovery work but I wouldn't have known how to tactfully ask how it is for you all at present. I try to remember every morning to pray for you that God will give you strength for the day ahead of you.

Alison said...

Gina - his OT is working on stuff like that and I have just spent the last hour setting up an elaborate system of shared calendars on all our devices. Thank goodness for smart phones - and the fact that I can add appointments and alerts to his remotely :)

Julie and Jayden's Adventures said...

I'm here for the long journey with you.

Anonymous said...

That's a lot of remembering and prompting for you to do for everyone! The electronic scheduling sounds great. I could make some old fashioned paper visuals if you think that might help.

love and prayers
sue

ferfischer said...

What a unique opportunity for you - I probably would be asking a ton of questions as well. I can only imagine how frustrating it is to be a child with a brain injury if it is frustrating for an adult. I wish I could climb in there, just for one day. Thinking of you all!