Hi need advice re sons moods he survived a severe ... - Headway
Hi need advice re sons moods he survived a severe TBI in 2010. people visit us he's norm fine when we're alone he looses control almost?
Hi,
Sorry but I don't think I can offer you much help with this as I have never had to deal with it.
But I would like to just wire a couple of things that might be worth thinking about and/or talking to a doctor about.
-- Could this be down to the TBI ? What damage has been done to his brain.
-- Could this be stress/depression, He may seem happy he may seem OK. But what gone's on In his head ? what thoughts are in there, How is he copping ? He may seem to be copping well but this may not be the case.
--- Could it be PTSD ?
Just a couple of things for you to think about. But please talk to a doctor about it. They may be able to offer him some help.
I'm sorry that I could not be of more help.
I wish him and you all the very best.
thank you so much for your reply, its so tricky because at hospital or docs its a short visit so he's able to keep control of his mood until we leave, he lost part of left lobe and has damage to the temporal lobe also. plus has to take 3 diff drugs to keep seizures under control, so meds are prob affecting him too
thanks once again Richard
Gill
Hi we have been through this a thousand times, my sons accident was in 2006, when ever we had people around, he would sometimes be quite rude then again be fine with people.
When we have been alone just family he would kick off big time, I mean swearing throwing things, breaking stuff you name it we have been through it. The key is not to let him get away with it, you need to be very strong, also it really does help not to respond I know sometimes it's hard not to, but this just makes thing worst. You need to tell him to go away in his room until he is ready to say sorry, I know it's like treating them as a child, but they are behaving like one, and if you don't tell them they will run rings around you. To be really honest it has taken our son 6 years to learn to control himself, but even the other day we had an outburst, but the sooner he has kicked off he says sorry straight afterwards, this does get better in time, but the key is to be patient and tell them they are doing wrong and not to behave in this manor. My son had the best of treatments down in Headley s
Court in surrey, but it's all takes a matter of time. Sorry this will not be a easy journey at all. Wish I could fix it for you as I know what it's like, it's like living with heckle and hide, but you know what I love him to bits.
Jeckle that is lol computers xxx
Hi gee thank you for your response that lightened my mood seeing the computer error! lol
its good if you know what I mean to see that this is typical behaviour after an injury to the brain.. its also a problem because docs dnt believe he can be this way as he always is polite with them, my youngest son and I get the brunt of his anger and that makes me feel pulled in two! I am firm with him as I have to think that one day he'll be back out in the world once more. how old is your son plz mine is 25yrs old
Gill
Hi Gill my son Tom is now 24, 25 in February. I have a older son who is 27 and daughter 23, so they are very close, but my older son has had a few battles with him in the past, which would of never happened before, as they are so close, this has eased off now he dont do it any more to him, its my husband and me who gets it, but like i have said its very rare now he goes off on one, think its when he is under pressure or got a lot on his mind. Its very hard isn't it, Tom when he gets angry swears is head off at me call me everything most of the time its like water off a ducks back now, but every now and then it gets to you and im in tears. You just have to walk away, until he calms down, which for Tom is straight away, he comes and hugs me and says sorry. I could talk all day, if you ever need to chat just let me know, ask anything you need to. take care and be strong x
you sound lovely, and u echo just how I feel too, I can cope with his anger n eva changing moods but his 17yr old brother can't, he left home Fri eve sayin I can't live with kris anymore mum, that tore me in two as they are both my sons..
Does Tom have seizures? kris does and before a seizure he can be very trying tho obv I know that is beyond his control.
thank you for your msg and for sharing your time with me
Gill
i had a sah in 2007 it is important that you underdstsand that the injured do and will have severe mood swings and can lose temper very easily myself i put it down to the injury and frustration
Hi ncmurphy I do understand that, but when docs
keep saying he needs more councilling because he's depressed which he isn't
its so frustrating for him and I, he was a very laid bk guy before the accident he
is not anymore understandably.
Thanks for reply
Gill
For me it is one of two thingswhy this happens to me
I have a TBI, and you try so hard to be normal around others and when they are gone I am so mentally exhausted that I have no tolerance left (by normal I mean you concentrate so hard on not saying something wrong or loosing your calm because rightly or wrongly you don't want others to see your weakness or problems)
The other is that other people can be distracting enough that they take all of your attention in a child like way that you don't really get the chance for people to see the real you
In one way you can take it as a compliment that he trusts you enough to let him see the real him(even if the behaviour is dysfunctional)
For example I cannot let others drive me anywhere, the only person I let drive me is my wife and even then I am shouting out, but she knows I am like that and that I really do trust her
Well that's just how it is for me, I hope that helps some
Mark
Mark that helps loads thank you so much, he does the same
thing re keeping calm around others and needs to sleep after they have
left, then he finds he can't sleep as brain won't allow!
I guess it is complimentary he is able to be himself around me
its just that Im pulled between his needs and my other two kids needs
so just get worn down emotionally.
But still not as hard 4 me as it is for you guys that have been through so just
much. thank you 4 your msg
Gill
i wouldn't say that we have it worse, we put our families through a lot, and to be honest if it was the other way round i am not sure i could cope with it, so don't belittle what you are going through brain injury affects the survivor and their family equally,
we are all in it together
Im sure you would be great you have empathy and understanding and that's something many people dnt seem to have!
I feel relieved to have people to share this with as there is so little knowledge out there people just dnt get it
Gill
I agree with a lot of what you say,
i can relate to this and is so true!
In the early months of my recovery I also used to rage about things. My late Mum looked after me and when I used to confront her with these rages she used to stand up to me. The raging eventually passed in a couple of years I think.
Good luck with this; suggest you take some advice from your GP/ask for a referral.
BTW, the person you knew before the TBI will in all probability either no longer exist, or it'll be just a few elements of the personality that will have survived.
I changed from a quiet studious sort of person into someone most would cross the road to avoid. I suspect you will have a learning curve to steer here.
My gp feels out of his depth he says so hard to get support, its got to
so hard for you being aware of your changes as it is for my son too.
my son has no friends now which is so sad.
he says he doesn't care tho in fact the only emotions he seems to
have at the mo is anger and sometimes humor too
thanks for chatting and understanding
Gill
my daughters tbi was in 2009 and her moods were out of her control, this upset and frightened her. she would fly off the handle, find inappropriate things hystecicaly funny or be in floods of tears and total despair over next to nothing, she could go through all these changes in the space of 10 mins sometimes. bikerlifestyles answer is very true, it is exhausting for the person trying to control behaviour and visitors also mean lots of conversation that can be hard to follow and be distracting. we were lucky enough to be reffered to a fantastic neurophycologist who reccomended she go on a drug called tegratol retard and this has changed her life, im not saying she finds it easy now but it has given her some control back. he said the mood centre to put it simply had been destroyed and this drug evens it all out. please dont stop trying, get your doctor to refer you to specialists in tbi. there is help out there. i hope things improve for your family and dont rule out depression either as this can be a normal response to the changes he is dealing with. good luck x
Hi MaggieKell thank you for reply, kris is on tegratol twice a day to him gain control again, initially it worked tho find it makes little difference now, he's also on keppra and epilim too, these drugs can also play havoc with moods I've been told, unfortunately kris is reluctant to get therapy as he says he is fine its everyone else with the problem..
He has had a depression test done during last wk but was found to be inconclusive!
How is your daughter doing now does she engage in the outside world more again now? kris is only happy on his xbox and will sometimes come to the gym
Gill
hi gill, my daughter was very anti therapy but she did after the first year go to a cbt therapist who she now admits saved her life. she was in a very bad place before this treatment. it helped her to know that it was totally confidential as i know there were things she didnt tell us for fear of hurting or scaring us. she was taught what had happened to her and why she felt how she did along with coping mechanisms for her problems. its nearly 2 years since she finished therapy and she still refers back to what she was taught. your son would really benefit from this but he has to be willing to go and i dont know what to suggest. my daughter has a good social life now but not many people from her past are in it. she finds being in a group hard work and says people think she is a dumb blonde as she cant follow group conversation. she is great with one to one. i told her about your post and she said at this time he will still be struggling to understand himself the changes to his personality and life. have you tried to get him to look at forums such as this one, he may feel like he is on his own with this so it may help. wish i could be more help i know what you are going through but it does get easier, hang in there x
Hi because he's now 25 he can decide against therapy which i fully understand, but wish he could see it would so help him, I as mum so feel for him and want to help Tim also respect his ideas and age..
Bless your daughter saying that I do feel she's spot on too i have suggested he has a look at this forum, he said no as he doesent have a problem its everyone else's fault, that's his words exactly..
loudly to chat with you again and thank you
Gill
maybe he will change his mind in time, i hope so but in the meantime please dont neglect your own feelings, get help wherever you can find it. i did the staying strong and in control for a long time then started breaking down in places like the supermarket just because someone asked me how things were, most embarassing lol. it was only then i realized i hadnt dealt with any of my issues as i put everything into here and her sisters. my girl was 15 when the accident happened, she is 19 now. good luck and take care x
p.s she has only recently began to look at forums so there is time yet x
Firstly sorry about spelling its auto correct on this phone! lol
I do share how I feel with some people and have a very supportive sister to but thanks for the suggestion its so easy to focus on the kids and forget we are human too!
On a more positive note we have had a good day today, mainly because he has slept most of it but he so needed to after the wknd he shared with us lol
I will suggest he reads these again in a few days, I've told him about ur daughter he was interested in what she said, so that's a step forward.
I so want to help other parents and families goin thru this even if it was only a number they could call.
speak again soon take care
Gill
In reading carers response to looking after people with ‘acquired brain injury’ it’s clear that parents and partners are very concerned and want the best for the person who has suffered from an ‘acquired brain injury’.
Richardhomer, I agree with your comments when you ask ‘how is he coping?’ As a sufferer at the beginning I was constantly frustrated at being talked about and talked over, not included; brain injury does not mean madness or regression into childhood. By the time I had thought of the answer to a question the decision had been made for me, before I had the chance to answer for myself. Imagine how frustrating that is?
An emphasis on ‘telling someone off and making them say sorry is not looking at what is happening for the sufferer of an acquired brain injury, or helping them cope with their changed world.
For quite some time I found 2 people in the same room enough, sometimes only one other was all I was able to deal with. My coping mechanism was when there was a gathering, it was ok for me to leave the room without protracted explanation and sit quietly, as my brain simply could not keep up with multiple conversations, plus television or music; I went into sensory overload.
Gllie63, you’ve raised a good point in questioning the medication; last year my partner told me that I was F*** and B*** nonstop, with my answer to any problem ‘well they can F off’. I was shocked and hurt when my partner pointed this out to me, as I had never sworn before my injury and was not aware that I was saying some of these hurtful things. Talking to my consultant she straight away said that ‘this type of behaviour was attributed to high levels of one medication I was on; confirmed by blood tests my medication was reduced and the swearing stopped. No amount of telling me off would have helped.
Hi Brighton88 that's some great points you have made thank you,
I am absolutely with u when you say about people talkin over u or about
you as that infuriates still, I always let kris make his own decisions and sometimes this works and sometimes not, hence we have not gone to all hospital appts becauseihe's decided against it!
My biggest issue in the here and now is how to make life easier for his younger brother whom he seems to hate now?
I've often asked how he's coping he will say fine I dnt care about anything anymore
its so hard when I know deep inside this is not Entirely truthful..
Gill
i totally agree here, i never told my daughter off as i knew she had no control over her behaviour. i would however when the crisis passed talk quietly to her. she would by then have thought about things without seeing it through the red mist of anger. she would be upset enough by this without feeling that we told her off because we didnt understand
So many areas have changed since my ABI/TBI in '97, yet many remain the same.
For years mum had to deal with my totally unreasoned outbursts and she, like i, had no idea how best to deal with it/them. I include mum in my ignorance, but retrospect tells without her support, constant love and compassion a far depleted version of andy would have emerged.
to an educated, yet limited, extent i empathise with what mum had to go through and believe the same true of other 'carers' of TBI survivors.
You have to remain confident time will help heal. It takes effort on your son's part as well as yours, although he will not be aware of this; his comprehension of life is very unstable and non-understandable. One of the most important things I required during my recovery was not having to question the love of my mum and brothers. This allowed me to, without recognising it, muck up in a diminishing number of areas in my life, but always have my 'nuclear' support to go back home to.
Gillie63, what i feel would've helped me more in the 5-10years after after the TBI is realism. I mean, too many people, professionals, family and friends, often felt though they were treading on egg shells, having to play the cards close to their chest. Definitely subtley to start with, people should have faced the facts for my benefit (dunno about theirs), as life has changed forever, but is not worse, just differentn
YOU and your son are starting from a very low level in understanding his life, but your son is an adult, so learn with him, but dont assume, nor attempt to persuade beyond an occasional wee suggestion.
This is so hard to put in such few words. It's an incredibley massive subject. But I'll try to leave you with wee bit of certain encouragement; maybe you'll react in ways you're not happy with, caused by his irrational actions, but try to remain confident as long as you are loving him you are providing him a lifeline. It wont be easy, but you are saving your son's life. Given time, his realisation and appreciation of his mum's love will grow and you will have been an immense part in giving life to another.
Good luck x
That's a fantastic msg Andy thanking you, I especially liked the bit where you say about walking on egg shells cos boy so have I at times but that wasn't right for any of us it appears to make things worse in fact so now Im gently honest with him and he much prefers this.
he says everything is black and white in his eyes so likes to know when I feel he's been inappropriate..
He used to say his life is over and gee I so understood why he would feel that way, but one day I just said could you look at it as tho someone has just pressed pause? and he said yes so that was a great step forward. Even tho his moods are quirky he also can be so helpful and generous too, he so needs to feel useful this gives him back his drive to move forward.
Last night I said Im with you every step of the way but need you to meet me half way he said maybe..
sorry to ramble on and cheers for reply
Gill
we go through life learning coping skills. After a brain injury we have to learn them all over again.The Brain cannot cope very well and this shows in many different ways. ... If someone had Toretts you would let the swearing go over your head as it is part of the brain disorder yes? With a brain injury it is one big disorder comprising of lots of disorders along side a hangover from hell..Ask him how does he want you to react ? I wish my family had asked me.My answers would have been, leave me for a while. love me . sympathize with me.listen to me.don't tell me how to feel... treat me this way... and so on.
another way of looking at it is... We all have traffic lights in our head . Instructing us to to stop . start., keeping it all our roads/links flowing. BUT when they go hay wire there is jams and pile ups and mayhem. TBI folk have a lot of road works!!! and traffic lights not working. The frustration from this coz we cannot fix it is why we are hard work... lol
thank you zainey-lainey
I have asked him how he would prefer me to be
and he says depends on how he feels that day, he does
like honesty tho, your traffic jams and pile ups struck
a cord with me and helped me realise the internal struggles
he has to endure, even tho i knew this smetimes seeing it
in black and white makes my understanding clearer.
thank you for your msg
Gill
My injury was 2011 and was severe i was in a semi coma for quite a while. (semi-coma ment i got up and ran about trying to escape and find a place. No memory of it ofcourse) but when you say he losses control when alone.. I am quite the opposite and prefere being alone as if i get in a group that becomes to big i get really frustrated and paranoid. its all control of the mind.. im just lucky before my injury i knew how to control my self in situations, i think theirs a group in headways i think to cope with this
Hi Andrew thanks for your reply, the last 3 wks have been alot better its as if something
clicked bk into place.. he now has a problem of not being able to sleep at night but is so fatigued. thank you for sharing your journey with us, do you have problems with sleep as well?
Gill
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