denial/acceptance of a TBI
 

I was wondering whether people had trouble actually accepting that they'd had a TBI, or at least the severity of it? Did you go through a period of denial and if so, how long did that last?

My other half had his accident nearly 5 weeks ago now (I'll post the background again sorry, I want to do a signature but am not allowed? anyway...) He passed out and hit his head, which resulted in an acute subdural hematoma, 2 skull fractures and a frontal lobe contusion. He had one week of post traumatic amnesia but luckily he didn't need surgery, and was discharged home coming up to 3 weeks ago.

The main problems he is experiencing are hearing loss (which we now know to be permanent higher frequency loss) and permanent tinnitus; fatigue; vertigo and headaches. Slight memory issues and irritability when particularly tired, but no real cognitive issues I don't think.

BUT the big thing I've noticed, is that he seems to be having trouble actually accepting he's suffered a severe TBI. He'll say things like "there's nothing wrong with me other than being deaf now" or "if I had a head injury, I'd still be in hospital." To me, it's ironic - the very fact he's saying he hasn't got a head injury indicates he's got a head injury IYKWIM? He does know what injuries he's sustained, but it's like he's in denial.

Is this common? And I'm not sure how to deal with it. I don't want to agree with him, because he HAS had a TBI, but on the other hand I don't want to argue with him either. It's exasperating and upsetting.

Hi Jamiesgirl,
Sorry to hear of your "other halfs" injury. Denial is common in TBI whether it's from the Health Care Professionals or the patients.....happens on both ends. The good news is he has you as his advocate, as many lack a supportive caregiver.

He is still early into his recovery and from what you posted, still fighting it. For the time being, you can help be his eyes and ears as far as the memory and other symptoms go, until he starts accepting it.

You are right not to argue with him, I know it is challenging (I know my family feels that way with me) but he is not reacting that way by choice. Do you have a professional you can talk to about your concerns?

Hang in there.

jamiesgirl,

He is likely just being a guy. Ego, pride, machismo, what ever, feeds this attitude. Add some personality changes and you have a perfect storm of denial.

You need to download the TBI Survival Guide at www.tbiguide.com. Print it out and highlight those symptoms you recognize.

Why do you feel he needs to admit he had a TBI?

The only thing that matters are how he deals with his symptoms.

I guess jamiesgirl might feel that if he's not acknowledging his TBI, how is he going to take the necessary steps to promote his recovery? If he assumes he's fine but just has a mild headache and a couple of other minor physical symptoms, then he might do something dumb like seriously overexert himself (as I did two weeks into my recovery, thinking that I was over the worst of it, which I'm pretty sure prolonged my recovery).

Might be easier to hear this tactfully from a doctor though. Denial can be tough to penetrate, even for people without TBIs!

greenfrog, Those ideas are obvious but I was interested in what her concerns were. She is very new to this forum and not necessarily up to speed. Many spouses have expectations and ideas based on wrong understandings. I see this frequently with newbies at my local brain injury support group. It is often easier to help 'after' understanding the perspective of the person and correcting any misconceptions.

Mark, I'm not sure what I wrote was "obvious" to the OP - if she's new to NT then I imagine she'll be interested in hearing more than one perspective. I certainly was, and very little of what I read early on was obvious or superfluous to me.

My concern is that "the only thing that matters are how he deals with his symptoms," while true as far as it goes, may be a bit simplistic. For me, understanding that I had had a brain injury ("getting it," in other words) was important - I only wish that this had been brought home to me earlier. My specialist is great but I wish he'd explained more clearly (and in no uncertain terms) what avoiding physical and mental exertion meant, why it was important, etc.

I meant it was obvious to me. You were replying to my question/post.

It can be helpful to draw out existing information before opening the fire hose of new information.

But.....

This is partly it, yes. I want to help him take the steps towards recovery and for example, have been researching what would be best in terms of nutrition and vitamins. But he's not open to eating the right things or taking supplements - whereas I think if he accepted the severity of his TBI, he might be.

I also think long-term he would benefit from talking to other TBI survivors, whether it be on a forum like this or at a physical group - but atm he would totally dismiss that (cognitively he's more than able to use the internet and has been doing) because he doesn't think there's anything wrong, he wouldn't think he has anything in common.

But it's also about emotional recovery & that's why I posted really. I am assuming that you would go through stages after a TBI or other emotional trauma, much like the stages of grief? And therefore am assuming that denial is a normal stage? I don't want to rush him through it (perhaps my OP came across like that) I only want to support him through it...I was just interested from other people who may have been through it themselves, how long it lasted for - just so I can prepare myself really.

The saying goes, "If you've seen one brain injury, you've seen one brain injury."

Every injury is different. It is best to identify the individual symptoms and treat, work around or accommodate them individual.

There are personality changes that can be temporary or long term. One common change is called rigidity of thought. This can manifest as stubbornness or difficult letting go of a single concept. The denial can be this rigidity of thought. Trying to push through it will be counterproductive. The stress of the conflict caused the brain to turn to fight or flight mode causing the rigidity to increase.

One of the problems with mTBI/PCS is the long term changes. He can continue to develop worse symptoms for 2 or 3 months. By then, it is easy to attribute them to something other than the mTBI.

A challenge he faces is even recognizing his symptoms. It is not necessarily denial but rather ignorance. If he has been self-directed and self-reliant prior to the injury, it is almost like he needs to fail miserably so that he stops to try to figure out what is going wrong.

So, the best you can do is study up on mTBI. The TBI Survival Guide is you best resource. Find it at www.tbiguide.com. You can download the 84 pages to print out. Then, when he has a struggle in front of you, you can excuse the behavior as a result of his brain injury. Maybe a " That is just your brain injury acting that way." or some other careful but appropriate comment.

Be ready to explain how you come to this conclusion. If he opens the door to reading the TBI Guide, make the most of the opportunity. Let him learn at his own speed. It can be quite humbling to accept the dysfunctions and changes to a person. As you commented, It can be like the grief process, just the initiating of the process can be delayed and full of conflict.

I assume he is driving. If not, or if he is but his driving is suspect, this can be an opening to some testing and therapy. A neuro rehab clinic should have the means to test his abilities. A follow up with his doctor may be able to start this process.

As you can see, there is no simple answer. Go slow. Get as much knowledge as you can.

My best to you.

Here is an article that talks about TBI and "denial". It also states there are certain situations (such as if the person is in danger of the denial) when there must be some intervention. Other times, it is ok to ignore it.


http://main.uab.edu/tbi/show.asp?durki=48139


Here's another one. This is an older reference, but it's told from the perspective of a TBI survivor:
http://barbara-pytel.suite101.com/tb...ications-a3229

Hi Jamiesgirl,

When I first had mine 8 months ago, I didn't worry too much about and just kept moving forward and ignored it. (BIG MISTAKE) I only have regret now. Since then i've hit my head a few times by accident of course and not major but man it really sets you back.

So I would suggest accept it and relax. It's still early in recovery for you.

Sorry I feel lke I'm joining the thread a little late but I'll give my experience.

I had a feeling of denial the first several weeks after clearing post traumatic amnesia from my TBI; while an inpatient in the hospital neuro-rehab unit I couldn’t identify the year or where I was, but I still said there is nothing wrong with me and I needed to get back to work. Four weeks later when my neuro psych evaluation indicated deficits in spatial orientation, executive functions, and short term memory, all I could think about was “when are these people going to let me drive and release me to go back to work?” (I was in a wheelchair at the time so I wasn't able to drive anyway).

My wife tried to do multiplication flash cards with me to help improve memory and cognitive processing; I didn’t want to practice this because (1) I couldn’t do it and (2) I didn’t want to admit I couldn’t do it.

When I began to realize I should be able to do certain things I couldn’t, I finally admitted I wasn’t quite ready to return to work and do all the things I used to do, I started trying harder doing the speech and occupational therapy exercises I was given. It took a while, probably six weeks total.

I think you are right that you can't agree with him, but arguing per se will be counter productive. For me, specific examples of things I was having trouble with helped nudge me over to acceptance.

I have told me wife that I feel fine and I look fine -- I don't have a broken bone. Then I try to do something and it is quite obvious that I am not fine (or she catches me saying something backwards -- "put your sink in the spoon"). I don't catch it, but she points it out to me.

She caught me trying to til the garden the other day. I didn't understand why I shouldn't. She explained to me that I am not safe on my feet and get confused easily. Something could happen. She would rather be with me if I really want to do it.

These specific things that she tells me helps me realize that I am not "back to normal" yet.

YES!

My Dr. and boyfriend think I was in denial, but I think I wasn't able to really understand what having a brain injury really meant until very recently (like within the past couple of months) and I'm twenty months out from the initial injury I sustained.

I do agree with Mark that it has to do with the ego - but I don't think it has to do with being a man. (I'm a woman.)

I think when there are sudden changes and new vulnerabilities in a person's life, then the ego is doing it's job by puffing itself up and rigidly hanging on to who the ego thinks the person is - a part of the ego's job is to protect the self.

I was convinced I could still do certain things for a loooooong time after the injury and even when I was completely unable to do them and could see with my own eyes what trouble I was having trying to do certain things I was still somehow convinced that I could do them. And I would just keep trying and trying to do them despite it all.

This is a part of where that patience comes in from your part. ;)

He's not thinking rationally or well - his brain was injured! He's just not able to think well or rationally right now. And his ego is trying to help him to cope. And it might be a while before his ego can be worn down enough to let go of who he was before the injury or for his reasoning to improve enough to overcome his ego.

It's a very difficult and weird process.

I'm still going through it myself - I'm still convinced that I'll make a much better recovery than I have so far! I was very attached to the person I was before the injury I sustained. I had a great sense of pride and accomplishment and I don't know who I am now and this has greatly effected my self esteem. I don't feel like I can accomplish much of anything compared to what I could do before the injury I sustained. I feel worthless a lot of the time. I don't know what my skills are now, and I feel like I don't have any, but I do know that they aren't what they used to be - so I'm hopeful that my skills will return but until then I can just hope and wait.

Experts believe that the people who are the most determined to make a recovery do end up making the best recoveries. My boyfriend is amazed at my willpower and motivation levels. I keep on truckin'. I think a lot of people in my position would have given up by now and he and my family agrees that is true. So, it might not be a bad thing if he wants to be the person he was before the injury - because that might help him to achieve a goal of the closest possible to it that he can get.

I hope this all makes sense. :hug:

Being 'in denial' is a common human reaction to a distressing situation. However with brain injury the 'denial' is often more than this, it can also be an actual cognitive impairment which prevents you from seeing the full extent of the problem. Technically it is referred to as 'anosognosia' or 'lack of self awareness'. It is considered common in brain injury.

I know I definitely suffered from this, and put myself in dangerous and irresponsible situations as a result. I also made myself look stupid, for example turning up to work and pretending everything was fine when actually I wasn't even well enough to have a coherent conversation with someone and had to be sent home more than once.

I seemed to respond well to people sitting me down and presenting me with facts eg 'look, if you're finding X difficult, don't you think you need more rest before attempting Y?'. It was kind of upsetting at times but I needed to be told.

Good luck in all your efforts, I got over it and so should he. It's great that you've come on here and found out more about what's going on.

Thanks for all the replies and the links posted, they've been really useful to look at.

Mark, he isn't driving at the moment. We're in the UK and he has to inform the DVLA of his injury - we haven't sent the form off yet but they generally revoke your licence from between 6-12 months if you've had a subdural hematoma. Can you still drive in the states after a head injury?

I think it just depends on the situation. I know that there is a mandatory 6 months reprieve from driving after a person has had a seizure, but I don't think there's anything mandatory in regards to a head injury.

My Dr. informed me not to drive at all the first time after she saw me after the accident. I hadn't, so it wasn't really an issue. (I just couldn't drive - I wasn't functioning well enough to be able to drive.) About 10 months later my driver's license was up for renewal and when I told the people at the DMV that I wasn't allowed to drive per my Dr.'s instructions they cancelled my license. I think I was supposed to notify them of my Dr.'s initial recommendation that I wasn't to drive - but I didn't know and I was not able to function well enough to figure it out.

Anyway, after a few more months, my Dr. thought I could start to practice to drive in empty parking lots and after doing so with no real issues at 5-10 mph (miles instead of km) she filled out a form for the DMV and my license was reinstated. She still didn't want me to drive far, or on the freeway at all and I'm still not able to do so just because my brain's not able to multitask well enough to and it also can't process fast enough to either. I typically drive less than 10 miles at a time - only when I'm doing my best cognitively. I finally started driving regularly 16 months after the accident that I was in, 3 miles each way to work on side streets and then home from work, three times a week. And now I drive myself to and from work every day M-F.

At first going just 30mph was really difficult for my brain to process and I stayed in the slow lane, but recently I have felt like my brain can handle driving 40-45 mph on most days. I'm hopeful that I'll be able to drive more and more in coming months and years.

Sometimes my boyfriend still has to drive me even short distances when I'm cognitively fatigued. And I'm usually never able to drive in the evening because I'm just too tired and that usually means I'm not functioning well enough to be able to drive safely.

I really miss the independence that comes with being able to drive myself anywhere anytime.

In Arizona, if you have TBI, the doctors have some discretion, but in general they inform the MVD of the injury; I had to take a behind the wheel driving exam (kind of like I was 16 again :rolleyes:) to get my driving privileges restored. Not sure what the rules are in other parts of the U.S.

I stopped driving after my wife witness my driving while following me. I had been deferring to her to drive using the excuse, "You can drive. You like driving this car" (BMW 528) I had already had some close calls and overloads.

One time, I was driving an old truck I was restoring. I noticed that I could drive down a 45mph road at 30 mph and be just fine. Cars were zooming pass. I commented that Idaho was good for me. It had allowed me to relax and be less stressed as demonstrated by my slow driving. Later, 2 different doctors suggested that I should not be driving. My brain's processing speed was in the bottom 10%. I finally understood that I was driving as fast as my brain would let me.

Idaho has two system. One is a mandatory loss of license and the other is an "inattentive driving" violation. You do not need to cause an accident to get cited for inattentive driving.

I have gone long periods without driving, as long as 2 years. I normally only drive a few times per week and only on my good days.

Hey jamiesgirl! Thought I'd weigh in on this snippet. Nine months ago I took a longboarding fall and sustained a vertical impact to the chin (it was likely a labrynthine concussion). For months afterwards I had a constant and loud low-frequency tinnitus sensation. At nine months, the tinnitus has softened. It goes away sometimes and is there sometimes, and is quiet enough that I rarely notice it. Hope this gives you some reassurance!

Yes, this has happened to me too. My tinnitus has gone from about 4.5/10 in intensity/annoyance to about 2.5/10 (I'm at the 11-month mark of my recovery). For the most part, it is a minor annoyance now (often I barely notice it).

denial/acceptance of TBI
 

Hi Jamie,
My son sustained TBI following a motorcycle accident in Sept 2013, so its now 8 months ago. He never made a sound for 6 months, and then started trying to speak. He can say a few words, but his speech is inaudible most of the time. He communicates with his ipad by typing if we cannot make out the words. He is in a wheelchair as the right side of his body is not operating the same as the left. He can move his left side perfectly, but the right side is stiff and moves with difficulty. He is at home and receives physio, occupational and speech therapy. My problem is that even though he cannot get up and walk, and also obviously cannot speak properly, he keeps on saying that he can.. He has very bad short term memory and asks the same thing over and over again. He constantly calls me to ask the same question (he is 21). He forgets what happened a few minutes ago, the previous day etc. He cannot remember his accident at all. He can remember before that, but thereafter is non existent. He wants to go back to work, and the more I tell him he cant as he cannot walk, talk or drive, the more he gets angry and says that he can. I tell him that he needs to recover, and he says he has, that there is nothing wrong with him. He gets angry and frustrated very quickly, and then shouts, swears and shows the middle finger. I wonder if anyone else has experienced the same with their loved one, and has some advice on what to do, what to expect please. How do I get him to believe/accept that he is disabled at the moment and has to undergpo therapy to recover? I am stumped, and so sad for him!!

In two days I will be at 18 months. Parts of me are still in denial. Basic human instinct of hope? I'm not ready to let go of hope.

Facing what's happened or the results of it is different for everyone. My husband has no brain damage but has refused to go to the doctor after wheezing for two years. For him it was two years. Second appt this week.

I'd say men and women are different, the ailment makes a difference, how often on must see doctors makes a difference, and so on.

Good luck to you.

Peace and wellness,

Jace

Hi Sharon,

TBI is very difficult for caregivers. Bless all of you!

As you are finding with your son, TBI patients are not always aware of their true condition. He really thinks, despite the overwhelming evidence, that he is his old self. When you tell him he can't go back to work, etc..., he is genuinely bewildered by your response. He probably thinks you're crazy.

It sounds like you're doing a lot of great things for your son. What are you doing for yourself?

I can't urge you strongly enough to join a caregivers' support group and to talk to your doctor about getting you some respite care, etc... It is NOT selfish to think about your own health. In addition to your son needing you fit and strong, you are a person, if your own right.