If you are a friend or family member or a significant other of someone who has sustained a head injury, you definitely have a unique set of challenges. Head injury is a terribly intrusive and disruptive condition to deal with — it can be extremely difficult for the survivor to deal with, and it can be utterly maddening for the people around the TBI survivor.
They got hit on the head, sure, but it wasn’t a bad injury, from what the doctor said. They weren’t even admitted to the hospital! They were foggy and groggy for a little while, but that passed. As far as anyone can tell, they should be back to normal, no problem. But all of a sudden, the person you once knew and loved — who may seem perfectly fine on the outside — is changed. Their temper is shorter. They forget things. They make stupid decisions and don’t even seem to understand how dense they’re being.
Subtle little differences can sneak in from out of the blue, and you sometimes can’t quite put your finger on it. They seem… different. You know they’re the same person they always were. But they’re not quite themself. And no matter how long you wait, no matter how patient you are, no matter how much you try to reason with them or walk them through things, they don’t seem to be getting any better.
Or, you can definitely see how they are different. They fly off the handle over nothing. They freak out over stupid things. They sleep all the time. Or they can’t seem to get to sleep or stay asleep more than 5 hours or so. They complain of constant headache. They complain of that blasted ringing in their ears. They suddenly grow aggressive, even violent, and they just “go off” for no good reason. They can’t seem to keep their act together and they keep getting in trouble with authorities – teachers, bosses, the police. Nothing anyone says seems to make a difference, and they don’t seem to learn from any of their mistakes.
For a loved one of a TBI survivor, standing by and watching someone seemingly self-destruct… or at least struggle terribly with things that used to be easy for them… must be terribly frustrating. And dealing with someone who used to be so sweet and loving, who’s now a pure terror when they’re tired or stressed, can be quite frightening. I, myself, have frightened lots of people I loved over the course of my life, due to my quick temper and a sometimes violent streak. I’ve never struck anyone I loved or lived with, but I have thrown and broken things and given people good reason to feel very afraid.
As a TBI survivor myself, I really feel strongly about what an important role loved ones can play in helping a head injury survivor not only recover from their physical injury, but rehabilitate behaviorally. True, the inside of our heads — our fragile, sensitive brain — has changed permanently, and some abilities we may never get back. Some of our cognitive challenges just can’t be helped. But when it comes to our behavioral issues, something can be done. I’m convinced of it. I’ve managed to overcome some really serious behavioral difficulties, and because of my relative success in this area, I’m able to find and hold down regular work. In this economy, you can’t put a pricetag on that capability. And most importantly, I haven’t done it alone.
Perhaps the number one TBI issue I have, is my temper. The inner storms that come up for no good reason really tear the crap out of me, at times. For the most part, I can keep my act together. 7 out of 10 times, nobody knows what a hard time I’m having dealing with something as simple and basic as dropping something or flubbing up. But it’s the 3 out of 10 times that get me in trouble. And it’s not good.
In my case, I am blessed to live with someone who is pretty demanding. They are that way by nature — they have very high standards, and they expect people to live up to them. I have been constantly pushed and prodded over the years to improve myself as best I can, to not misbehave, to not be lazy, to not be lackadaisical, to not just give up. They have “ridden me” very hard, over the years, sometimes nagging and nagging and nagging until I thought my head was going to explode. But at the end of the day, when I did what I promised I was going to do, or I finished a job I’d started, or I’d done what I was supposed to do, or even when I’d tried and failed, the fact that they’d stayed on me turned out to be more good than bad.
Their encouragement has sometimes been gentle, sometimes strident, sometimes impatient, sometimes overly demanding. But even when they’ve been too hard on me and have given me all kind crap about things I couldn’t control – like my difficulties with remembering things, or hearing them when they were talking to me, or being slower on the uptake than they expecte me to be.
One of the things that’s made our life together more challenging over the years is that we didn’t factor in TBI in our interactions and my shortcomings. But when they started to learn more about TBI, they started to change the way they interacted with me, and they have been far more helpful than ever.
Once upon a time, they pushed and pushed and cajoled and nagged and cursed and hounded… with different levels of success. Now, they understand that patience and encouragement can go a long way. But they — and I — also know that sometimes I do need to be yelled at, in order to get my attention. Sometimes, I’m being so slow and dense, I can’t “get” what’s going on, unless it’s expressed at the top of someone’s lungs.
I don’t take the yelling personally, when situations are tight. I actually need to be yelled at. Or I’ll miss an important cue, I’ll run over that pothole, or I’ll do something that can get me hurt. The important distinction for me is that the yelling happens before an event, not afterwards, when it’s too late to do anything about it. If someone is yelling at me, because I am being dangerously slow and they’re trying to protect me, well then, please, by all means, yell at me.
For me, it’s important that people not handle me with kid gloves. My brain has been rattled a number of times over the course of my life, and in some ways, I’m really, really dense. I can’t be coddled and accommodated and treated like some victim by the people in my life. And I also can’t be given carte blanche to just do and say whatever I damn well please, ’cause I’ve had bunch of brain injuries. It doesn’t help the people I love, to let me run roughshod over all of them. And it makes me feel terrible, when they let me do that.
Like it or not, there are sides of me that need to be disciplined, that need to be kept in check. And they need to be called what they are — unacceptable — by the people who are affected by them. Including myself. There are certain sides of me that need to be called out and stopped, before they do damage. My temper is hot and precipitous and often flares up with out my realizing how or why or that it’s in the process of happening. And when I’m going off over something that doesn’t warrant my level of rage, I need to be told to be quiet. I need to be told to calm down. I need to be told that my outburst is not appropriate, and I need to step away and calm myself down before I can be around other people. I need to be called on my crap, and I need the people around me to refuse to accommodate bad behavior.
There really is no excuse for bad behavior. There are plenty of reasons for it and my TBIs have not helped, but there’s no excuse for letting myself get out of hand and stay that way. Left unchecked and unstopped, temper tantrums, yelling fits, being snappy and course and crass and obnoxious is disruptive to everyone, hurtful to others, and it’s embarrassing to me. After all, I have to live with me, too. It’s not just about my loved ones. It’s about me having to look myself in the eye every morning when I get up. It’s about me being able to hold my head up, having self-confidence that comes from knowing I can manage my behavior, and having the pride of knowing I’m in charge of my own fate, even if my brain doesn’t always cooperate.
But I need help managing. I need help from my partner, who constantly amazes me with their patience and their intelligence and their willingness to stick with me — as well as their strength in keeping me from running roughshod over them. I need help not only with encouragement, but also being pushed to see what all I’m capable of, to see how far I can go in life, and to keep tabs on my inner situation as I go. And my partner has given me that regularly over the yeras.
Most of all, they’ve helped me by keeping me honest, by refusing to tolerate my bad behavior, my laziness, my eagerness to just give up. They have “kept on me” about so many, many things that I wanted to just let drop. They have prodded me to do right, when I wanted to just quit or do wrong. And they have flatly refused to put up with my crap, threatening many times to leave my ass if I didn’t get my act together and stop being such an a**hole. They have told me in no uncertain terms that the tone I was taking was verbally abusive, or that I was frightening them, or I was getting out of line with my snarky comments. They have yelled at me, cussed me out, made me sleep in the guest room, refused to cook me dinner, given me the silent treatment, taken away my credit cards, and nagged-nagged-nagged me till I did what I was supposed to do, anyway. And I have never once doubted that they loved me, and they were doing all of that not because they were mean-spirited or wanted to hurt me, but because we both have standards to live up to, and they weren’t going to let me off the hook that easily.
Now, sure, there have been plenty of times when I’ve railed against their behavior. I’ve moaned and bitched and fussed over their demanding streak, and how hard on me they could be. I’ve wept bitterly and angrily over things they’ve said and done, and I’ve yelled back plenty of times. But in all honesty, I have to credit them and their unwillingness to tolerate my TBI-induced stupidity, aggression, and stinkin’ thinkin’ for much of my success.
And I also have to credit myself. Because frankly, I wouldn’t be with this person — and I wouldn’t have stuck with them for 18 years — if I didn’t have standards of my own. If I didn’t agree with them about the range of acceptable behavior, and what is and is not allowed in our marriage, I wouldn’t be able to tolerate their level of demanding-ness. Rather than finding their standards annoying and aggravating, I find them good and positive reminders of things I already know, but easily lose track of.
Of all the things that make successful TBI recovery possible for me, standards of behavior — and the enforcement of those standards — are some of the most important. Understanding that some kinds of behavior are good and allowed, while others are not, is key. Having a code to live by. Having a set of internal guidelines. Agreeing upon rules about what is and is not okay. And submitting to the discipline of being policed — both from within and without — is key.
And my partner has played a huge role in all of this. If they had been inclined to hold back and not engage with me… to be the silent suffering type who just let me go off as much as I liked, and didn’t challenge me… to put up with my crap and then go talk to friends about how hard I was to live with… to not face me down and make me behave myself — or else… to do like so many people I know, who don’t understand what’s going wrong and don’t want to make waves and piss other people off, so they do nothing besides take the brunt of their loved-ones’ anger/rage/temper/sharp tongue… If my partner had been like that, I would not be as well-off as I am today.
Now, make no mistake — my life is no bed of roses. I’m really struggling, these days, with job stuff, learning difficulties, job performance issues, and extreme fatigue. I’m almost beside myself with frustration and agitation, and I am having a hell of a time sleeping. But I have no doubt that all these things would be catastrophic for me and my career and my living situation, if I didn’t abide by very strict guidelines about what is and is not acceptable, what is and is not okay to do/say/outwardly express. If I just cut myself slack, or if I lived with someone who suffered silently while I went off on tears all the time, I probably wouldn’t be here.
I’d be in jail.
Or on the streets.
And I would be alone.
I’m not kidding, and I’m not being facetious. I don’t say any of this lightly.
So, it may sound a bit overly controlling to some, and it might sound like borderline BDSM, but discipline is one of the biggest keys to my success. I’m not advocating loved ones of TBI survivors being strident harpies who give no quarter and drive their brain-injured loved ones to the brink of madness with an unending string of impossible demands. But there is something to be said for demanding that people do/be/talk/relate better than they are at the moment — and better than they think they can.
Ultimately, I think that we are all capable of far more than we think we are. And the first step towards being/doing/living better, is refusing to be/do/live worse than you have to.
10 thoughts on “TBI Survivor Loved Ones – Don’t Put Up With Our Crap!”
Hey, great topic for a post. We are always so focused on the people with the injury; we forget that the people supporting our recovery also need to be considered. A post like this helps them gain insight not only into how we struggle to recover, but also what their role is, how important it is, why it’s important, and how to perceive the relationship so that they know what behavior is most helpful. Thanks!
Real recovery is very much a team effort, and without mutual support — on all sides — TBI (and PTSD) can really take a toll.
Doing the victim/martyr/hero dance only works for so long. It’s exhausting, any way you look at it.
I totally agree with both above posters. I have had no support other than my husband with both my father and our son (and I won’t go into the fact that my husband ALSO is a TBI survivor). It is most definitely a silent epidemic on our society that can cripple the lives of all the entire gamut of people that it occurs thru! I get very frustrated with the fact that there are groups for everything today but nothing really for TBI and the reasons I have heard are so far fetched:”every injury is so different that it is hard to have one support group style”, “well when dealing with kids and TBI is is hard to say what is the injury and what is adolescence”,”well you know, at least they are alive and dying of cancer”…. I can go on and on with the ‘reasonings’ I have encountered…
But thanks to blogs from survivors and family & friends maybe someone will soon get the point!
sorry rant rant rant… sigh…
No problem – rant away. It’s true — that whole “every brain is different” thing is a total cop-out. Hasn’t anyone noticed that although the brain may be different, the person is still human? We do need support… and all too often we have to find it ourselves, which is about one of the dumbest things I’ve ever encountered. Okay, so you’re seriously impaired in ways that cut to your core… but you’re so damaged, you’re on your own.
It’s so easy to get discouraged — hang in there and keep plugging away. You probably have loads to teach others who have to deal with the same stuff you do. Good luck with it all!
I agree that the interpersonal dynamics that occur with individuals with TBI is a big part of the picture. And I agree that BI is not a carte blanche for acting like a brute or bully BUT……
BI affects psychological state in three ways;
1. Whatever psychological issues you bring into the picture usually don’t go away, if anything they will be magnified. So if you had a troubles in your marriage or with your kids or folks or boss before; well that will still be there and you may have less fortitude to deal with it. Since most folks have some baggage in their life it kind of goes without saying that people with BI are going too also. It may even be that certain individuals, especially those with mTBI, are pre-selected for interpersonal issues; they may be more aggressive or risks taking Type A personalities to start with (thus they are more inclined to situations where BI can occur) – (but that’s just a stab in the dark on my part) – but whatever – the bottom line is that one should assume that the issues you had the day before your accident remain the day after.
2. There is, quite naturally, an emotional response to the loss and changes of brain injury; in fact this is really a two part response: the first is the psychological adjustment to the changed ‘self’ – including the frustration in saying ‘do I have a brain injury’ or ‘is this normal’ or ‘what does this mean’ – when you have no or minimal visible scars or signs. The second is the response to the cognitive after effects, such as noise intolerance or slowed processing speed which make life out of synch (especially in our high speed multi-tasking country)- as I once said – I feel like a Ferrari engine in a Edsil body.
People who lose limbs, or have heart attacks go through emotional responses to those things – thus it’s no surprise that we have an emotional response when the dramatic change is to the seat of the emotional state – your brain.
3. There are organic psychological changes that occur with some (perhaps all) of brain injury. When parts of the brain that are involved in emotional processing, including impulse control, are damaged, then there will be a change in emotional functioning and state. This may mean more hyper, flatter affect, quicker to anger – it may mean a change in behavior, becoming more flashy or more vulgar etc. Or it may mean a slowing down, a more reserved and withdrawn person.
All three of these emotional states are a normal part of the brain injury and brain healing/recovery/etc. process. In particular I would add that right after a major injury it is very common for individuals to experience incredible fits of explosive anger. I liken this to the ‘terrible twos’ – those tantrum stages that occur just before little kids become cognitive tornadoes, consuming all in their path. This anger is part of your brain healing. It cannot be controlled or suppressed any more than a limp could be controlled for someone who’s broken leg is healing. It sucks, it is brutal on those around the person, it is not rational – but it is what it is. By the way, depending on the injury this phase of extreme irrational anger can last for a year (or maybe more?).
Folks who have had permanent damage to emotional centers of the brain may also have some real time functional limitations to their emotional self management. They MAY be able to relearn some of the controlling factors over time – but not without help or support and a great deal of understanding. This is generally true of the more moderate and severe TBI’s but since the brain in pretty complex it may be that a person with mTBI has milder issues in this area as well. Furthermore many folks with mTBI do not see how they present, since they make lack or have lost some degree of self-awareness in this realm – thus it may take them some time for them to get to the point where they recognize that there are issues.
Obviously the frustration of having difficulty hearing, or seeing or focusing etc are going to impact people – and not because they are self-indulgent or malevolent. Think about it – many years ago people with multiple sensory failures (deaf and blind) were treated as wild beasts to be ‘tamed’, then autistics were considered ineducable – what we have learned from this is that when you mess with sensory modalities or cognitive functionality you mess with emotional response and you cannot assume that the emotional response is just ‘bad behavior’ – it’s part of the cognitive realm . Psychological torture is based on these principals – create an endless, unclear interference in the ability of a persons mind to process and they will get angry/overwrought/overwhelmed/helpless.
Now I am not excusing BI folks for bad behaviors – not at all. What I think is three things:
1) BI people are injured and the ones who love them and care for them will have to accept that. So, yes, I ask for tolerance, understanding and compassion.
2) BI people need the correct kinds of neuropsychological/cognitive services to help them manage this.
3) If possible, the people that love someone with a TBI should be included in some form of counseling so that they too can understand and learn how to address these issues.
What this means is that there is a process for establishing better emotional response – understanding on all parts that this is NOT NECESSARILY about what happened in your childhood (though, as I said, we carry into this the psychological baggage we started with) – but rather a lot of this is about a brain that is misfiring and the frustration of that. There are ways to address this that do not demean the BI person nor make them out to be infantile or psychotic or pathetic but rather help them become autonomous individuals who lead happy satisfying and emotionally healthy lives.
It’s also worth noting that sometimes people without BI injuries act badly too – nor are they always rights simply because they do not have a brain injury. So it’s important that in these interpersonal issues one does not assume – oh, you are the brain injured one and so you are the one who needs help in seeing the error of their ways. We all have snit fits and behave badly at some point in time. (and it’s worth noting that sometimes people WITH BI act badly — not becasue they have a brain injury, but just because they are being a stupid human)
The right neuro-psychologist, who understands brain injury and particularly mTBI, is really important. As you have mentioned many folks are quick to identify these emotional behaviors as ‘pure psychological’ issues and give you a DSM-IV category of bipolar, borderline, depression, anger reaction etc – and then give you drugs. Many of those drugs (if not all) are very very detrimental to people with cognitive issues and brain injury. So little is known about the mechanisms involved; a good neuropsych will work with you a while and help you assess what YOU think you want and need to live the life you want and need. It may include drugs, but it doesn’t always have to. (and yes, sleep, meditation, exercise, pleasure and down time, healthy eating, good planning, saying no, etc all help)
The process of working through the issues and finding balance is harder to do with workplace situations for the obvious reasons – but if one develops and works on skills at home or with themselves this will extend into the workplace.
The most key factor however is that one should not feel guilty. You are injured. That’s not a judgmental statement its just data. The process of dealing with these issues will take time to figure out. Marriages and relationships often collapse under the stress of any trauma, and especially with brain injury. This is hard stuff, but its not a matter of pulling yourself up by your bootstraps. Organization, time management, self control, human relations – these are weak spots for every individual (note how big the self-help sections are with this stuff) – when you add a brain injury to the mix it gets even more complex.
I will make one important point in the anger issue and that has to do with children.. Parents who have a mTBI may display their explosive behavior around their children – and particularly with young children there is no way this isn’t going to be detrimental. Again, I don’t place blame here, but I do think that whatever can be done to prevent this or to intervene so that children, who cannot conceptually understand, are not asked to take the brunt of it is very important.
I certainly think that the people in our lives deserve recognition and acknowledgement for their support and for their understanding. No one marries or falls in love or has a child etc with the idea that this person may change dramatically or that this sort of stuff is part of the deal. And it may be very important for those individuals to find resources and support from others who can appreciate the issues they are facing. At the same time this is what life is – a mix of good stuff and bad, losses and triumphs. It may be too much, too difficult – again, no judgments. And you may have to find your own inner strength to understand how to approach this, how to keep it from hurting yourself. And that’s not easy.
In the end however we have to let go of things, let go of the memories of the horrible fits of anger in the past, let go of things said that were probably not even meant, let go of who failed who, and just move on, live here, live now.
You know, agree with a lot of your points. I think my main concern is that although these issues all exist and are perfectly valid and real and serious, I don’t need to let them run my life, and I should definitely not allow them to ruin my relationships and the lives of the people I know and love. I am far more interested in being a productive member of society and a decent team member, than I am in accommodating my difficulties. Yes, there are things that have changed with me, and those things are genuine physiological, cognitive-behavioral issues. But I can’t let them just take over my life. At some point, I need to be held accountable for my bad behavior, and if I can’t prevent it or change the root causes, then it’s up to me to make up for it and do what I can to at least control the damage I do.
Yes, I do need to understand what’s going on with me, as do my family members. But I’m not willing to use the reason for my bad behavior as a way to excuse it. And they need to be allowed to help keep me in line, not coddle me and treat me with kid gloves ’cause my brain got messed up.
I wholeheartedly agree that tbi issues should not run our lives – nor should we pretend that they don’t exist. Many of these things need not be ‘deficits’ nor represent failures or incapacities but they are certainly not failures of character either. My point is just that I don’t want partners/family/friends beating me up for the very things I struggle with – I also don’t want to persist in negative or destructive behaviors. It seems to me that the only way to address these issues is to make them non-judgemental, to take them away from blame and guilt and punishment and put in them in the right category – a behavioral manifestation of injury. THEN, from there work to address them – through therapy, through communication, through strategies and good self care, through whatever tools or techniques or skills or whatever you need and your partner/family/friends need to work through those issues. Most folks are terribly in dealing with conflict, tbi or no tbi – it’s usually either a battle for control, withholding, bullying, denial or coercion. This is why it is especially important to address this in a positive way when dealing with tbi; much of this anger/conflict/emotional upheaval is due to sudden neurological changes. If they are seen an intentional and willful acts of personality then resentment, and reactive anger builds and people go no where. If we can step back and understand what is going on may not have ANY interpersonal issues at all then we can develop a better strategy AND learn more about how to distinguish that sort of blow-up from the ones that DO have an interpersonal component. In the end it may be the same neurochemical pathways that cause anger but how we address it and respond to it (and how partners etc respond to it) may be, should be, directed by what the basis is. That’s what understanding means for me. Knowledge isn’t an excuse, its a tool. I also believe that it takes time to modify things, to learn – and we can’t expect that a single therapy session or insight or strategy will turn off (or fix) a broken mechanism. I have a toaster where the pop- up feature doesn’t work, if you let the toast go unattended it burns. I could get a new toaster but I like this one just fine – it just needs some care to the act of toasting.
PS. Again, bosses and children are special categories. It is becasue of this that rehab facilities usually have tbi patients re-integrate back into the workforce slowly, in order to better assess and understand the potential issues that may exist and enable people to address them.
PPS. I hope I made it clear that I do not condone or support unbridled anger, nor excuse tbi folks – a big part of healing is recognizing what your issues are and addressing them. I know very well the cost of anothers unneccessary anger and it is not acceptable. BUt I also know that guilt never did any good that I can see. It’s straddling those lines that is tricky.
I am close to someone with TBI. They’re doing their best, and their best is better than most people on a regular day. Everyday, when we talk, they tell me about their numerous body challenges and I listen and try to keep them happy and active with things to look forward to together. Lately, when we spend time, if anything goes wrong in the day, I get blamed for it, or their close family members get blamed for inciting them. I just tell them I love them, and we can talk about it later when they calm down, but sometimes it takes them hours to calm down. I am trying to be supportive in every way that I can, and I wish there was a guide book for loved ones of TBI. I don’t know how to help most. I want to be sympathetic and understanding, and I also don’t want to enable them to just blame everything on the TBI and on their closest friends and family.
It sounds like you have your hands full. There actually are books available that talk about people’s experiences with loved ones with brain injury. There are online communities too that can help. Check out Give Back LA – they have information there for friends and family members. Check out http://www.givebackla.com/?cat=86 for more info.