Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
I would describe myself as a consistently competent and resourceful soul; I was never destined for great genius, but I have always been able to learn and adapt to meet any challenge that came along. The result is not always pretty, but its usually successful. Problems are challenges that I normally enjoy and thrive on and if I'm brutally honest, I'm not very good at failure. I tend to sulk.
Brain injury is 'other', it is different, it exists on a separate plain where the normally resourceful and competent person is completely helpless.
What do you do when your husband, a 42 year old intelligent man, refuses to get out of the car when you are in a hotel car park in the dark and rain? You're 120 miles away from home, it's Boxing Day, he's shouting that he wants to go home, and he is so overloaded and tired that he cannot hear anything you say. He is literally unreasonable.
You're not his health professional or carer, you're his wife. You're tried and frustrated after a challenging Christmas (well, a challenging 14 months actually) and what you really want to do is leave him in the car and go to bed with a large gin.
No, scrap that, what you REALLY want is to have spent the day walking on the beach and then sitting in a pub on the Quay getting squiffy, talking and laughing with your pre-injury husband. Fat chance.
I've looked in my toolkit again and again and no matter how many times I look I simply don't have the skills or the resources to solve this problem. It's exhausting and frightening. It's just too big and unwieldy a problem to solve; it's like trying to nail jelly to a wall.
The only thing that keeps me sane is reading the inspiring stories of other survivors and their families and the knowledge that, although it will never be the same as it was, it will get better than this.
So Happy New Year to those survivors and their families and also to those of you with a huge, jelly like problem to solve. Don't give up.
Oh, and if you have any suggestions as to how I deal with these situations I would be VERY interested and grateful to hear them!
Hey Dorset Charlie.....HAPPY NEW YEAR TO YOU AND YOURS ...!!!!
Nailing jelly to a wall huh...so that's how you see us difficult ,obnoxious individuals....lol...I love that expression . yep ,I get it and understand it from both sides. Did you get your husband out of the car..?
The key word you used was 'overloaded'. I have done the ,TAKE ME HOME NOW tantrums more than a handful of times and this is how I explained the overload..
Take a snow globe and give it a damn good shake. Place down gently and watch the glittery snow spin and swirl around the stationary something in the middle....pretty huh...now imagine stationary object as being the Brain injury survivor , and all the glittery swirling snow as useless bits of information that mean nothing in their own right and add up to nothing ,just noise and probably a few days of input, add to that,past memories trying to be remembered ,recent conversations trying to be forgotten,too many lights , stop the lights, yes I cans, no I can'ts,I left it there ,i know it was there,I remember , no I don't, more noise ,added to more noise... all swirling and spinning dizzily out of control ....round and round and round....That stationary object cannot get out and it has no control over who shakes up the plastic bits of glittery snow. Nine times out of ten, you won't wait for the snow to settle completely before you give it another shake and probably harder than the first......I know I cant hold one without giving it a shake at least twice.....That little object in that snow globe is your Husband, the bits of snow his overloaded injured brain...no escape.....Just leave it alone and it will settle all by its self.
I still have snow globe heads, but not as often as i did. Now I am able to explain things a little better where as before I would go straight into overload tantrum...I used to have to stop all in put, that wasn't of my own making..I didn't want to be on my own ,but I didn't want to be talked to.....I didn't want stimulation of any kind,which as you know is quite impossible at times..I would start to settle and the phone would ring,or the door bell would go or one of my sons would get up and walk out of the room in front of me a bit to quickly and that would be enough to set me off in tantrum mode all over again....Am I making any sense here...? If I am in overload mode then I expect everyone to move around me with exaggerated slow motion...so that my brain that is trying so hard to down load can keep up....I am exhausted just trying to explain it.......I think now would be a good time for me to shut up. What do I know I am one of the injured and not a carer.....I Know now, five years on, that I would rather be walking in my shoes than yours.Being the injured is definitely the easier of the two minefields to tread..
Like I said before If I can help just one person...and I am so glad its you.. I an a happy B.I.S. Your blogs make me laugh, but they also remind me of how hard it has been for my sons to care for an aggressive old mare like me....Its so not you that shakes the globe all the time and even your husband wont know it is been shaken until it's to late, most of the time, and past the point of 'no tantrum' return. He is still mending and the snow will settle. But more often than not its the things that we don't even pay attention to that set us off...
Think PMT at its worst and you are having a bad day...no...make that a BAD DAY !!
...Everything that could go wrong ,did .You know that when you get home from work you can get a cuppa and a hot bath and it will all be ok .You put your key in the door and are clinging to the thought that sanity will arrive shortly .you are feeling better already as you kick the front door shut behind you.You head for the kitchen and flick the kettle on and while it is boiling you take the tea bag out and drop it in the cup and you think that you are starting to download your day. Click, kettle has boiled...In goes the hot water, on that much awaited cup of tea, followed by the milk...take tea spoon and stir ...In the very second you realise that the tea bag is broken filling that cup of much needed tea with spitting bits of tea leaves , the days events all of which went wrong, the ones you thought you had left outside when you kicked the front door shut, all come screaming to the surface along with PMT that has been tapping you on the shoulder for a few days.. MELT DOWN !!!!...You know the one ? ..Followed by tears and snot bubbles to the point where you cant control the tears or the almost always incoherent rant the comes with it...You cant stop it and really you don't want to because you know you will feel better and laugh about in a few hours time after you have decided ,sod the tea and open a bottle of wine....? multiply that feeling by 100 and you have a brain injury overload....you didn't know that the tea bag was going to break and you thought that you had emptied you head of the days events ...You had no idea that it was going to be a bloody tea bag that shook your snow globe !!!!
Blimey that is such a good description. I could never really tell anyone quite how it felt. I used to blow off like vesuvius somedays only to go again a little later in the day. Unfortunatley it was my nearest and dearest who took the full force. It took me forever to see what i was doing. I once told my children to 'f' off out my face because i couldnt cope with the noise and movement. They were doing nothing wrong just being children, i couldnt deal with it. Best thing we did was get a puppy. Anytime the globe was shaken i was handed the dog lead, i didnt question or argue, fog lead = shoes and coat= walk with dog. I live on a farm and they could point me in the direction of an unploughed field and i would walk/stumble around it then go home and crash in bed. Most days now i get the dragon lady head when i am tired or ill or stressed out. I still am not aware till i blow but people around me can tell and help limit damage.
That the one .....When I am In globe mode I can only handle the noise and movement of my own making...God help the person who dare to ring my phone or knock my door. They had better hope and pray that my children get to them before I do. As for my boys..well they put me in my place daily and i can accept a telling off from them..They get it and they get me. LOL...Even their friends when they visit will shout, " Put it in a bowl", at the very sound of a crisp or biscuit packet by the uneducated...In fact that has just made me think what a damn good job my sons have done in educating their friends and how looked after I am by their friends....They get it and me to....How ashamed I am that it has taken me 5 years to realise this....I feel a snow globe head coming on !!!
Happy new year all! I get all of this too, hubby and I have come up with a coping strategy for these events, we've had to really since the kids were two and three when he acquired his BI. We have all sat down and agreed that when dad looks like he's about to blow/has blown we get a can of Coke and shake it up and hand it to him. He knows, because he was the one who came up with the idea, that when someone shakes a can of Coke and hands it to him he has to walk away from whatever is happening and go lie down in his room. The analogy being that if the can were opened then and there then there would be a hell of a mess to clean up for everyone but if we all took time out and let the can settle then approached whatever was going in in a more calm mindset then things would be a lot better. I'm not expecting it would work for everyone but it works for us.
Dorsetcharlie I've been in similar situations to you and the only way I've found that works is to sit, let him rant, let him get it out of his system either with you there by his side or further away to give him space then, once he seems calmer try talking reasonably again, it's not easy hon, it's not their fault, it's not our fault, it's just life x
Great strategy! I wish he would realise its not his fault; I tell him that all the time and that it is our relationship so our job to make it work, but he is very hard on himself.
Yeah hubby is on anti-depressants because of the guilt he feels putting the family through all this as he says. I keep telling him that the life we have with him as he is now is what it is and I don't even think about how it would have been had he not survived. Tough keeping him positive but all I have to do is think 'what if....' Soon makes me realise that having him here with his BI is better than not having here at all xxx
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