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.
As we have travelled along this strange brain injury journey, which has swung from a hurtle to a crawl and back again, I have learnt that you need to be really, really adaptable. The problem with this is that I, frankly, am not.
I like structure and predictability; processes make me shiver in anticipation and I get no greater pleasure than from creating a task list or spreadsheet; I plan and prepare for everything in minute detail. For example, I have bought and wrapped my Christmas presents, the decorations are up, the cards are written and sent and the Tesco's delivery is booked for the 22nd. I have even planned this blog (I know, hard to believe).
Life in brain injury land doesn't work like that. Life in brain injury land is like trying to quickly navigate the length of Oxford Street, blindfolded on Christmas Eve and tied to a Japanese tourist who wants to go in Selfridges...again. You can't plan it or predict how it will work out. Anything could happen, none of the other shoppers are interested in helping you get there and you'd better hope you don't get trampled on or trapped in the middle of Oxford Circus.
So, on I go, bouncing off the shoppers, lampposts and beggars half heartedly dressed as Father Christmas, hoping for the best and keeping my fingers crossed that we reach Marble Arch in one piece.
The latest problem I am wrestling with on this bonkers, unpredictable journey is how well Jake is doing. Ha ha ha - I bet you read that twice!
Yes, I did say Jake's progress is a proving to be a problem for me. I have got so used to Jake needing help. Until recently he's needed help to; stand, walk, sit, eat, choose, talk, read, write, understand, cope, remember, open and close things, lift and lower things, tidy up, go to bed, get up, get dressed, shower, shave etc. etc. etc. He still needs support with most of these things, but it is more guidance and prompting than actual help and it seems to have happened when I wasn't looking!
This means I keep getting it wrong, very very very wrong. In fact, I keep falling into the patronise trap. I don't mean to, in fact I 'mean well'...which is rubbish really. What makes it worse is that I get seriously aggravated when someone else does this to him, particularly those who should know better; Dr's, therapists, nurses....and, err, well, me.
Jake is understandably irritated by this and it causes untold angst. The man is a saint most of the time, but even the most understanding and forgiving soul gets pissed off if you repeatedly patronise them.
So, this is my pledge; I will haul myself out of the patronise trap and will try to remember the extraordinarily intelligent, resilient and determined man who CAN do things for himself, rather than the brain injury deficits and frustrations (not just his!) that trip me up and lead to me fussing and mothering.
If you see or hear me doing this you have permission to kick me in the shins.
Sorry my spelling is awful and there is no excuse ,with spell checker..but does it really matter...not in the bigger picture..Its going to be one of those days!!! lol
I cant thank you enough for the oxford street/tourist thing.....I have a meeting tomorrow with my sons school...a school that refuses to see why my 14 year old son is a young carer when I seem capable enough to argue my point where their lack of understanding is concerned....She seems ok to me ,kind of remarks to my son have indeed pushed all of his buttons at times.....I gave your blog to my son to read and he has said that he wants to use it in his meeting tomorrow......I cant thank you enough...Oh the uneducated...My son feesl the same way as you do...and I have undoubtedly put him through hell over the last five years...If it helps, this is how my son explains his day...before school he makes sure that My day is mapped out...drugs are at the ready and labeled .he reminds me every day that I must not attempt to bath by myself (he doesn't want the house flooded again), he reminds me that I must not cook (he doesn't want to come home and find the fire brigade here again).since he was nine he has been my care giver...even reminding me in the first years to change my sanitary wear because I would forget..( we have a sticker chart for that now.) He sorts the mail..pays the bills..but on a good day when I am feeling very capable and he steps in....I chew his head off with a thunderous" I CAN DO IT MYSELF I'M NOT A BLOODY INVALID". he describes my head and our day to others like a game of tetris...all the blocks fit together and slot in nicely ,then it all speeds up and nothing fits in and the whole lot comes crashing down with a flashing neon sign that screams ..GAME OVER. At which point he will run me a candle lit bath with my fav bubbles and gently take a his sobbing ,overloaded Mum to the bathroom. I am still scared to bathe alone..the beginnings of my SAH happened while bathing with my grandson..who was just two at the time. So my son will sit and talk to me about anything that will distract me from my panic until I am relaxed enough to breathe evenly and let the warm water work its magic...He will reach for the shampoo to wash my hair and again,,,I will make noises about being able to do it myself....he never wavers...he will just say "ok Mum I am here if you need me. He is just doing what he has been doing since my return from hospital...and I forget how hard it must have been for him then....and how hard it must be for him to let go now at times...because he doesn't know if its going to be a good day or a bad day for his Mum until it happens....Even I don't know...and really it should be my job to remind him to clean his teeth..after all I am the parent.....So you see ,he loved your Christmas eve shopping trip in Oxford street .blindfolded and tied to a Japanese tourist....He laughed out loud and said " that about sums up my day most days, I know Its not meant to be funny Mum but I am going to use that in the meeting tomorrow ,Its how we live our life and they should thank their lucky stars that they don't have to live it.. But Mum I wouldn't change it now or you now " He then got on the phone to his elder brother and I heard him laughing and telling his about the Oxford street navigation on Christmas Eve. Who also found it a great way to describe a day in the life of brain injury. I had my surgery on his 16th birthday and along with his little brother he cared for me until he left home this year at 21 and passed the reins to his little brother....All of this is probably not what you wanted to hear ,but as a family we have laughed , cried and screamed at each other and I guess we all find it easier to laugh about the bad days on the good days ..I would be completely lost with out my young sons ,My brain surgeon fixed me but everyday my boys save me.
Wow Drusilla- your son is extraordinary! He must love you very, very much. I am glad my blog made him laugh and I am very honoured that he wants to use it in his meeting.
Bingo !!! We had our meeting at my sons new school of choice...and he is in and County are going to pay for his out of catchment bus pass Yeahhhhh!!!!!....His main point during his interview was..I am a young carer and I have my up and down days and I don't need your help, I just need your understanding..he said....My old school just didn't get it,me ,my mum and all that comes with our crazy family, I would just like you to understand this..My Mum read it to me and it was posted by someone who does understand ...living with brain injury is like Oxford street on Christmas eve...etc etc etc. They got it...!!! and said representative from his old school, also in the meeting, was as my son saw it,.." Mum did you see him? He was like a worm on a hook"..So Dorset Charlie, Your blog played a part in educating the new teachers and securing my son a place in our school of choice which we have been fighting for ,for three long and stressed out years. So a big thanks again from us to you. x
Drusilla, firstly can I say thank you - your honesty is brilliant - as a carer it gives me a perspective my husband is unable to articulate. You should write your own blog, Dorsetcharlie has me nodding away when I read hers because I have been where she is and I think it's absolutely fantastic that Jake is making these great strides - long may it continue Charlie! It would be brilliant, if you feel you can do a blog I'm sure there are others on here that would support you in it! What do you think?
Well thank you very much for the compliment..I am truly touched...But most days I try not to voice how I am feeling or what it is that I have messed up again...God help the masses if I got on the laptop on a bad day... I would frighten the hell out of those starting out on their brain injury journey of recovery...along with their cares. I am a very emotional person,,I have always been different , I was born to stand out ,not born to fit in...add a brain injury to that and the mix is one that is almost always random and out side the box. I try to go with the positive and not the negative but on a bad day ,when I am a blubbering screaming mess...mmmmmmm. lets just say I am glad for my headway card although the only place I have found that it doesn't work is at the reception desk in A&E or indeed with my sons old school...let me give you a for instance...Not happy with a situation at my sons old school I was confronted by a new teacher that didn't know me...he was aggressive and rude,not to mention in my face. I showed him my card as I could feel myself about to call the police and save him the trouble of doing so....(since brain injury I simply don't deal with confrontation of any sort at all) This, was his reply and I quote " I don't give a damn about your card,I know people with worse brain injuries than you that don't have your problems or your silly homemade card"....can you see why my son was unhappy in his school and why I felt the need to get him out..? Just to put your mind at rest The police weren't called....but my son had some very stern words for that teacher and we both left...My son to look after me, and me to look after my shocked wounded and upset 12 year old. I could have written a book on my sons words of wisdom on the way home that day. He was 12 at the time and the one thing he said that ripped my heart out with a spoon was simply this, "Mum this world if full of idiots and that is something I can do nothing about, but I promise I will never leave you to have to deal with idiots like him on your own" But on a lighter note...I made a casserole today ,well the slow cooker did..and I collected my Grand Daughter from nursery by myself and we studies frozen cobwebs on the way home...We made up a story about trees with no clothes on...I did some washing without shrinking it all..prepped a casserole for the slow cooker without losing the tops of my fingers to the veg knife...and remembered to feed the dog...Today has been a good day ! My son has had a day off of his caring duties...although he still hovered in the back round while I was armed with the veg knife and couldn't help but check the contents of the washing machine when he came in from school...bless him. We had a email from my other half who is in Afghanistan ,so that also took the pressure off ....and hopefully when I get to bed tonight I wont have to read the last three chapters of my book again in order to remember what it is that I have been reading for the last three weeks.
Keep smiling people...Even if no one else understands us (and yes I mean you Mr.Cameron) Here ,we all understand each other. x
Thank you...we find more things to laugh about these days....and I do a lot of crying on my own , not because I feel sorry for myself but out of the guilt and pain I feel for my little family .My Mother wasnt strong enough to deal with things..We havent seen her for about four years now. I am not sorry that she left me ,I am however gutted that she couldnt find the strength to stick by her grandsons....but I understand it..I was having a screaming ,plate smashing day and I was very abusive ..she left in a flurry of ..."I dont have to put up with this"...But she wasnt prepare to weather the storm ...Her lose because five years on ..I am still a moody cow , quite random ,aggressive at times and live in total chaos. However with the help of my sons I can cook a mean Christmas dinner and my garden always looks wonderful...I was like you ,totally organised in everything..nothing left to chance and really quite meticulous .But hey ho ,I have since watch two Grand Children born and been able to watch my sons grow into incredible young men, although very quickly. Hang in there you are doing a fabulous job and your blogs brighten my day. Its good to know we arent the only ones struggling to make sense of it all....Keep blogging...Love Dru and crew.
I was exceptionally lucky to have a head teacher at my childrens primary school who had a son who was a neurologist at the hospital i went to! this made things a bit easier. I got school and family support and a abi supprot worker for me and advocates and young carers for the two oldest and then there was other support from school, they started a home work club and cooking club and gardening club. These were all on the back of my injury. My daughter left the school 6 years ago and today they are all running and they started a breakfast club too. They have young carers come into school one afternoon a month to check up on any problems because there are quite a few children today who are caring for siblings and or parents.
It is so reassuring to hear that there are other mothers out there that have experienced similar problems. My daughter found it difficult to let go of being the 'grown up' when i started to get better, she said it felt like i was taking away her role of carer. It took her a while to adjust and to let go as i mastered new skills, She is aware that i will always need supervision and like your boys has had to pick up the pieces when i fall apart. I love the tetris analogy, it really is just like that.
As for your card, i have one from headway that says i have a braininjury and may have problems etc. I also carry one with my carers details on.
The biggest headache for me is the government benefit people and thier understanding of brain injury. I can do things one day and not be fit for anything for a week!!
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