Hey everyone

I'm looking for advice if possible 😊 for those who don't know,my partner suffered a TBI and one of the things affected long term is his mood/lack of emotion

Yesterday we had a wonderful day out at the science centre in glasgow but it was very hot and I could see him becoming irritated and he told me his head was really sore( another thing he now suffers from)

On way home he took his meds and we stopped off for ice cream n by then his headache was almost gone but he was really quiet!usually this means he's starting to get tired(another problem that really affects him) I asked if he was ok n he said yes!in the car I stroked his arm and back but he didn't respond!he was quiet all the way home n never spoke much in the house either so I asked him again if he was ok n he started to get snappy with his reply!then his sister called and asked him to call around restaurants and arrange a Mother's Day dinner at late notice!this added to his stress and after several places saying they were full I noticed his face starting to twitch!this happens when he's really stressed out or has too much to process at the one time n it usually ends in him getting angry or upset!his sister called again to let him know the times that their other sibling was visiting and they had to work around it and he went off on one at her!i told him he needed to take 5 mins as I could see all the signs that he was getting extremely upset but he became defensive and at one point turned it around suggesting I was the one that had the problem and not him!so I sat quietly and let it play out!we went for dinner and after he had eaten he asked me what was wrong!i explained to him that there are several stages or signs he shows

When he is becoming angry n overwhelmed and when I see that happening I try to stop it where possible as it can often end in him saying or doing something hurtful and then he can go into a depression where he hates himself for who he has become!he was completely unaware that he was even starting to get angry!we spoke a lot and he can't really remember the last time he felt angry or excited or really happy about something ☹️ but I see him going through all of these emotions every day!the problem I have is that I know when he's getting really angry or upset because of certain things he starts to do for e.g. He will touch his face a lot,sigh,develops a facial tick at his top lip and starts to stutter which only makes him more frustrated and he hates himself ☹️but I don't know how to help him before it gets to that point!it would b easy for me to take a step back or sit quiet but that's not helping him!And pointing it out only makes him defensive as he's completely unaware!any advice would b helpful as I feel if I could just catch all of these emotions before they fully erupt then I would b taking a lot of stress off of him and in turn Also me xxx

33 Replies

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  • Hi Gemma, I have almost exactly the same problem with my husband. The last twice that has got stressed like this he has actually collapsed , been totally unconscious and then had a mini fit. He has been hospitalised both times but each time they have put it down to the way he handles stress. I asked for an urgent neurologist appointment and they have prescribed Oxazepam (I think it's a type of Valium) which I can give him when I see the stress building. It is difficult to get people with a bi to understand how stress affects them if they aren't good with emotions.

    Now, I can see the signs of it happening (as you can) and try everything I can to calm the situation but it isn't always possible. I hate that I now have to take all his stress as well as mine but there is no other way.

    Do see if you can get an appointment with a neurologist, your hubby is more likely to take notice if he is told by an expert that he needs to learn how to handle the stress. Unfortunately it is impossible to remove all stress from our lives if we want to have normal times, we have to learn to cope with it.

    Lots of luck

    Jan x

  • Thank u Jan 😘 that sounds awful about ur husband,u have it so much worse and still sound so positive!love to u and urs xxx

  • Hi Gemma what you've got to work with is that you know a lot of his signs, pain, tiredness, frustration and anger. If you see he's starting to get the headache from noise or heat etc then you can encourage him to take some meds and make sure he goes somewhere quieter. The frustration side with a feeling his brain is being overloaded then the best thing is offer your help, but he probably won't take it, he will probably give up himself or sort it but it take longer. When you have a tbi you still want your brain to do what its always done, and when it won't it feels like its in a washing machine on spin. The more you try the faster the spin and the more frustration which then turns into anger.

    With a tbi where there's so many quick changes to moods, and the best thing you can do is give him quiet space. Take yourself out of the equation till his mood changes. I learnt the hard way, if I offered help or asked him to communicate and share his feelings it would aggravate him. If his mood turned to anger then he would just keep coming at me verbally attacking me. So now I can see the anger in his face (if I was to ask him he would deny it and say he was ok) so I don't say anything and I take myself off into another room. He knows from the way his temper explosions have badly affecting my health before, to stay away from me.

    I know its difficult to handle, but just read his facial expressions and act accordingly. But don't overwhelm him by asking him things. His brain is in a battle with itself part of it is telling him that he should have no problem doing what he use to, and that there's no problem. The other part is screaming I can cope with this, this is too much, I don't know what I'm doing, I don't know who I am, why can't I do this anymore.

    Angie x

  • I think that's exactly it,I'm so keen to help that I ask if he's ok or can I help n he gets annoyed with me n says he's not a baby then I feel upset that I've been snapped at then he gets annoyed at me not smiling anymore n it just goes on until he leaves n I'm left crying when I only ever just wanted to help him!i feel like if I walk away then I've gave up on him n I promised I'd never do that but it's defo having a negative effect on my moods now too!i will try wot u have suggested tho,thanks so much,love to u and urs xxx

  • Gemma its a learning kerb, reading signs and accepting that this is how things are for now. That's not to say with rehab and support that he won't learn a way to cope with the moods and feelings. But until then just give each other a little space when you see one of his triggers. I have had so many hurtful things said to me and it does hurt. But I now protect myself from having my space and he knows he has his.

    I know its hard but just keep reminding yourself when he does show one of these moods. That he feels trapped, he would probably give everything to be the man he use to be, and thats a battle inside him going on. My partner suffers low moods because he feels overwhelmed with all these moods coming out all at once. That he hasn't got control that he can't remember one moment to the next, that he wants to say things to me but he can't. I bet your partner feels exactly the same, we just have to remind ourselves when we deal with these situations.

    I hope you have a good day today, let me know if it works or if you need a chat you know where to find me. ;-)

  • Thank u so much!it does all get overwhelming for everyone e involved at times doesn't it!i love the bones of him,more than I love myself and that's probably part of the problem,that I'm trying to help him n he's trying to help him n no ones helping me n I sometimes just take on too much!i know he loves me and that defo keeps me going!im spending the day with my family and he's doing the same with his so the break will do us good 😊 thanks for always being there xxx

  • I totally understand you love him and you want to help him, but there are limits and alot of the help needs would be from rehab, and partly from himself. Your best action is support him, some help if he struggles or gives something up in frustration or anger. With my partner I have to make him slow down (pull on his brakes) when he is going to do something. If he slows down he's got a better chance of succeeding, then he feels good and feels accomplished and I tell him that I'm proud of him. You can see a difference in his face.

    Just take one step at a time, read his triggers, give each other some space to have peace and quiet. When you have your time just do something like you use to or pamper yourself it just recharges you.

    I'm glad if I've helped in any way xx

  • Hi Gemma, this is something he really has to learn for himself, it would have been better if his sister had done the meal arrangements, I can't deal with things like that, it really stresses me and then my speech goes and my brain starts freaking out, so I don't even try, it's something that others have to do for me.

    It was a few years before the emotional me returned, I knew my emotions were flat, and hoped they would return, eventually they did but that was the time I couldn't even look at myself in a mirror because I could see "I" wasn't there behind my eyes.

    Being self aware, is a difficult one, it takes babies quite a while to learn it and it often has to be relearned after BI.

    It wasn't easy learning to respond to my partner again, he had to be very patient with me, as I was recovering I had a lot of relearning to do and I was very self-centred for a long time but it has been worth the slog, it has been a long hard road and even now there are improvements to come, I will get there, and hopefully so will both of you.

    Patience is the watchword and as much help as you can get from the family, this is a new life for you all, try explaining this to everyone and don't push too hard when he is learning all about himself.

    I still spend a long time just being quiet and "just me" not the me of old but I've learned to love the old me and I can now laugh just as I used too.

    Take care

    Love Janet

  • Thank u for taking the time to read and reply!im still learning so much just now and really appreciate all the advice!its horrible because some times he can b fine,he can laugh n act silly n ud forget there was ever an issue if it wasn't for the scars on his head!he can b so affectionate and I feel so loved and looked after!then the other side is when he's so broken,he hates himself and will say it out loud that he hates who he is,that he's rubbish and I could honestly just hold him forever but that doesn't help because he doesn't have the same love I have ☹️ when he sits quiet I worry he's depressed or over thinking and I want to help,I never really considered that he's just taking some time out!i do worry for him but I think selfishly I worry for me too!im really glad I found this forum because there's nights I just cry because I'm so confused n upset or I've tried so hard to b patient or paint on a happy face all day!im so glad things are heading in the right direction for u and that u continue to make progress,its Lovely to always hear these things!love to u and urs xxx

  • That should have read the new me. I really should proof read before I post!

  • Hi

    I won't do a long reply but just to say my husband has learned to take time out and I have learned to notice when he is doing so and leave him to it so he doesn't pick up on my anxiety. I am gatekeeper to the rest of the family and have made sure they are told when they are asking too much of him. I gently introduced him to concept of mindfulness and he is learning how to meditate with that. It actually helps both of us.

    You are, in some ways his carer. I don't know how much you still have to do for him but I thought I was doing what a wife should do and that was that. When I contacted my local carers association they came straight back and said absolutely I am a carer and can ask them for support. I haven't yet, but felt so much better knowing it was there if needed.

    Have you tried asking your GP for a therapy referral for you? It might help you work your way through your feelings and find coping tools. In order to be able to help him you do need to look after yourself.

    xxx

  • Thank u so much for ur reply!i never thought once to seek help for me because we are always focused on him!the main cause of me becoming upset is because I take everything on.....I deal with his feelings and outbursts and emotions or lack of,but I also have to deal with mines plus the day to day upkeep of my home and the children and my job and money worries!but while I'm struggling with everything there's no one there for me!u can't talk to family or friends because my partner is very private and doesn't like people knowing things,he just likes to have a happy face for others looking in!i feel like I'm always at the bottom of the pile n I know that's a selfish attitude to have n I feel terrible for having it!im going to try and find some quiet time,just time for me,no phone or interruptions,and just breath!i will also speak to my GP!thsnk u so much for ur help xxx

  • Hi Gemma

    Especially for adults it can be really difficult to accept that we have to learn things again. It isn't so bad when there are things like physiotherapy or speech therapy but when it comes to the subtleties of human interaction it's a whole different kettle of fish.

    We need help but can often be too stubborn to admit it.... If you can get your other half to agree to it you could set up a system where at the earliest sign you tell him (calmly and firmly) that he needs a five or ten minute chill time.

    It's slightly different but in my case i had problems with inappropriate outbursts in conversation. I had it pointed out to me and the husband and I agreed that he would put his hand on my shoulder and call my name. It worked for me.

    He must learn to say NO. It's not selfish. It's being responsible for both himself and others.

    Have you got the information on fatigue from Headway?

    Love n hugs

    Xoxo

  • Thank u for taking the time to read and reply,I think that's exactly wot we need,a sign or a code word of some sorts before the damage is done. No I don't have that information but if u could send a link or point me in the right direction I would really appreciate it xxx

  • headway.org.uk is where you will find the option to download leaflets.

    Hope they help.

    Love n hugs

    Xoxo

  • Thank u so much xxx

  • Hi Gemma i can only give a view from my personal experience. Even nearly 2 years on post stroke i find it takes time to process new situations/information and because of the mental energy used it causes fatigue. Not sure if you've had it explained to you what fatigue feels like. My best description is like when you have flu and your head feels all woolly and also feels like someone is pressing down on your skull. You can't think straight and just feel rotten. The main thing i can suggest is trying to alleviate any stressful situations like the ringing round restaurants on mother's day.....That i can imagine must've been pretty stressful.. could you explain to his family how pressure like that isn't helpful to him?

    Rachel x

  • Thank u for reading and replying!i totally agree with u that he really shouldn't have been the one to have made the calls when he has a brother and a sister both similar age!i think because he's now years on from his accident that everyone thinks he's fine again,n on the outside I guess he is!hes also got a habit of acting fine around certain people because he hates people thinking he can't manage!but that in itself can b draining too!he try's so hard to put on this front that he's exhausted n often moody when it's just us!i think the worst part for him is the fatigue because he looses all motivation n that gets him down!but when he tries to sleep it's like his brain won't shut down!he twitches n jumps in bed n wakes up suddenly!this can go on all night n he wakes up worse than when he went to bed!i have a thyroid problem and when I don't take my meds I can fall asleep standing up so I have a small idea how horrible it can b but his is really bad :(

    I can't really talk with his family because he's not fully honest with them himself and has asked me not to say anything to them and that he can manage this himself!this only puts extra pressure on both him and I!so I keep everything in n he does the same then he explodes and I cry n the circle starts all over again xxx

  • I understand where you are both coming from, I read that are from Glasgow, have you asked if he can go for reset bite for a few days a week: headwayglasgow.wordpress.com/ or you can call or email their main centre if you need help yourself with how to handle him: 0808 800 2244 or helpline@headway.org.uk

    My head injury was over 15 years and every now and then it reminds me that its still there via tiredness ect even the depression comes back then goes again

  • Thank u so much 😘 xxx

  • For years I felt alone in my teen years and for the past 3 ish years my local headyway in Bristol run a monthly social group with where I can met other people who have had similar experiences which has helped and they say that I inspire them ....

  • I think after 6 years he's still finding ways to manage things and I think time will help me to help him too!this forum is so useful though for pointing things out that I would never have thought of tho xxx

  • after 16 years im still finding ways to manage things like a busy day at work makes me tired (I work full time for my local council in the IT department) and I forget everything and all my collueages are aware and I get panicked and my mind goes blank

  • My partner doesn't work,at this time I honestly don't think he could!i think it would really help if he had something though!he signed up to the gym to focus on his health n fitness and in the hope that he would maybe get a better sleep but he finds it hard to motivate himself to go!i would go with him but I work every day xxx

  • Lots of people that I met recently don't work he needs to work upto it slowly maybe by starting at home or going for short jogs ? I find it hard to motivate myself but sometimes I have to force it maybe he could find a gym buddy ? (http://www.findafitnessbuddy.co.uk/buddies/going-to-the-gym.html)

    what do you do for work?

  • Has he gotten any form of outlet for his angry or frustrations ? I find zumba helps to combat street, like I said maybe meeting other people in his area that are going though the similar situation helps for both him, you and his family see if your local headway run carer groups or other activities, I find I cant read everyones reposes as its too much information also see if his doctor can provide any recommendations

  • My mother had the same problem with me ..... and I was very stroppy indeed, almost to the point of violence.

    I never ever struck my mother, God forbid; but a few others' weren't quite so lucky.

    My mother sought professional advice and was told to stand up to me when things like this occurred. She did and apparently it works.

  • Oh lord I don't fancy my chances if I got bold with him lol!he was very angry years ago but it's certainly got better over the years and he has never ever been violent towards me!he hurts more with words although I truly believe it's never said to hurt,it's because he has no filter xxx

  • Hi Gemma,

    A lot of what you're saying is very similar to what I have heard from my fiancee. I've found that the distraction or 'fog' as most call it makes it very difficult to practice any kind of mindfulness, which often makes me act in a self-centred way. The frustrating part about it is that there's never an intention to act or think that way, it's very difficult to think beyond the present moment or 'outside' what's going on right now at this second.

    In my case my memory and emotional struggles are surgery and chemo-related (Something I'm told may improve post-treatment). One of the biggest factors is the difference I perceive in myself since all of it began. I know I'm not the same, I'm not as quick, I have difficulty processing information and I tire easily. I've also had to give up driving until after chemo ends (12 month minimum post-treatment), something I loved to do and gave me a great deal of independence). One of the hardest things for someone in this position to do is to reach acceptance, and I don't think I made any progress in understanding it until I did.

    Your partner sounds a lot like me in that he doesn't say much and it all comes to a head/is vented duing an argument or when tensions run high, I'm exactly the same. I find that my ability to express my emotions only tends to happen when they're particularly strong, be it excited, angry or unhappy, at any other time everything is kind of 'numb', if that's the right way of putting it, which is why any arguments usually include "Why didn't you tell me any of this sooner" and would actually have prevented them in the first place!

    With regards to your comments about his family and their ability to understand or awareness of his condition, this also rings true for us. I'm originally from Cheshire and moved to Glasgow a few years ago, so we don't see my family in person all that often. When we do get to see them its usually for an event or birthday etc, so it's not an appropriate time to sit and thrash out the details of a BI. It was only very recently when I was visiting them by myself that my father got to experience it first hand - I was packing my bag to return home and had misplaced something (In a room I couldn't remember going into) and it was infuriating to the point I was berating myself and losing my temper. Once I'd cooled off I explained to him that it wasn't uncommon for things such as that to happen.

    My partner often feels very isolated as a result of nobody else being 'aware' of the problems she sees me experience every day, and although she is incredibly patient with me, there's only so much she can internalise before she has to let off steam. Something we've agreed on over recent months is that it's absolutely essential we both get some time to ourselves to unwind, be that her going out with the girls for lunch, me going round to a pal's house in an evening, etc. It can be hard to work up the motivation to do so (And don't get me started on my inability to plan anything!) but it's a big help. Being under each other's feet 24/7 is a surefire way to reinforce the 'Patient/carer' feeling. I'm quite fortunate as the friend I usually vent to is very receptive and understanding when I talk to him about my BI and what it means.

    As far as getting exercise and such goes, it doesn't necessarily need to be the gym. I've recently taken up golf lessons and have also started to play the guitar. Both require patience (Something I don't have in spades...) but when I reach small goals like hitting the ball right or learning a new chord, it gives me a little bit of self-esteem, something I've achieved, no matter how small. It's really important to have those small victories where you're 'more than a patient'.

    If it's mental stimulation, I've considered (But haven't taken the leap yet) of starting a blog or diary of my experiences. Although concentrating can make me feel tired, I find it very therapeutic to offload my thoughts and feelings without it having to be an outburst. If I go ahead with it I plan to share it with my partner so she can get an insight into what's going on in my head from my perspective.

    Sorry for waffling on! Hopefully I've managed to be coherent in my rambling!

    Alex.

  • Thank u so much for ur reply!the way uv just explained things could be as if u ate talking about me and my partner to a T!!u seem to be more aware than him though with the way you describe ur actions!he isn't as aware as u and I have to point things out and then he gets really mad that "I didn't say anything sooner" but when I tell

    Him at the time he Gets really defensive n it's often not worth the argument!im going to get him to read everything uv said and show him that it's ok not to b ok sometimes!thank u so much xxx

  • Hi Gemma,

    You're welcome, I'm glad what I said seemed familiar and hope it helped to put your mind at ease. Please let me know what your other half says when he reads it, I for one found it a huge relief when I realised other people were experiencing something similar and I wasn't just losing my wits.

    Alex

  • I think ur blogs a wonderful idea,and I think sharing it with ur partner is also a great decision because sometimes things make more sense or hit home harder when written down and the person has time to read and take it all in!often my partner doesn't hear everything I say or hears one thing negative and doesn't listen to the rest because he thinks I'm getting on at him when he feels he's been doing so well!Or it can lead to a row n he gets overwhelmed n can stutter which only makes him more annoyed!i find if I send a long txt to him he has time to go through it all bit by bit and respond in a calmer way!and when it's all written down I think it makes him more aware of the point im trying to put across!plus if he gets mad he can ignore me for an hour lol!perhaps a blog would b great too because it makes u aware of everything ur doing aswel as showing improvements that perhaps u don't notice daily but on reading again u might notice it!ive just got home from work and he's out with his sister but when he gets here I will have him read ur post!thanks again!love to u and urs xxx

  • Hi Gemma,

    No problem, all the best.

    Alex.

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