[swingwing]

My adult brother suffered a TBI eight months ago, including minor bi-frontal lobe bleeding and a subdural hematoma on one side. There was also evidence suggesting diffuse axonal injury. He spent nine days in ICU and lacked short term memory for two months.

Long story short, despite amazing progress in months of inpatient therapy, my brother appears to be in full denial of his cognitive and emotional deficits, which are quite significant. He has been living with our aging parents for two months and they are overwhelmed and "done" with him. He is just spinning his tires now and muddying everything, so to speak.

He refuses to take medications, even upon threat of being kicked out. His fuse is extremely short. He can't even remember to brush his teeth. If we gently remind him, he turns red, clenches his fists, and will storm away. Three minutes later, he acts as if nothing has happened. He is incredibly selfish and behaves like a teenager, convinced he is right and we're wrong about everything. All the fine and gentle features of his personality that evolved over the past 20 years seemed to have been sandblasted away.

I'm convinced his denial is psychological, a survival mechanism. After he failed to order something online for two days, asking my help, I confronted him strongly about why he was having trouble now, when he never asked me before his TBI. He got very upset and defensive, but I managed to get him to say this before he shut me down completely: "If I believe my brain is all messed up, then it's over. My life is over."

I was told recently by his outpatient therapists that I needed to let him go. They did. He was refusing to participate in the practical therapies that would helped him. He tells everyone they let him go because he was better, and says with a complete lack of irony that they would have kept him had his brain been messed up.

Can I do anything for him before we let him go live alone like he wants to on his SSDI income and food stamps? He won't live in a group home or half-way house, he says. He thinks he's going back to his hard work, which involved climbing ladders, yet he can barely walk upstairs carrying one bag of groceries now. He keeps saying his friends are saying they have tons of work for him, yet they deny saying this to him. He used to drink a lot too, and I can't rid my mind of him returning to that as soon as he starts hitting walls in the real world.

I want to be able to sit him down and force him to see his deficits, then be there for him when he breaks down. Can I force him to see his deficits? Can I show him his inpatient and outpatient discharge reports where they clearly say he has far to go? He recognizes he has trouble doing things now that used to be easy for him, but refuses to blame the brain injury. His brain is better now, he says, and we are being negative and not believing in him if we suggest otherwise. If we press, he shuts us down and storms away.

Do I have no choice but to let him go discover his deficits on his own, and risk a second TBI, or jail, or worse?

[Mark in Idaho]

swingwing,

Welcome to NeuroTalk. I am sorry to hear of your brother's struggles.

It is very difficult to break through the rigid thinking that is a common symptom of TBI. The first thing you and family need to do is find a brain injury support group. Most state Brain Injury Associations have a list of them.

What state do you live in? Maybe I can help you find some resources.

There are two online resources you can check out to help you understand more. The TBI Survival Guide at www.tbiguide.com is an excellent resource. You can download and print out the 84 page guide.

The YouTube video series "You Look Great" by John Byler can be found at [URL="http://www.youtube.com/watch?v=x9Xso4qGdlI&feature=youtu.be"]http://www.youtube.com/watch?v=x9Xso4qGdlI&feature=youtu.be[/URL It is 6 segments that take about an hour total. Your family will learn lots from watching it.

I think his therapists are right. He will need to fall and hit bottom to learn he needs help. It is tough for a guy to accept that he is broken and needs help.

You may want to check your state's judicial commitment laws. If he is not able to take care of himself, some inpatient time in a locked facility might be worthwhile. A locked memory care facility may be appropriate. Knowing how it works to be ready if the time comes will be good.

Establishing a guardianship over his SSDI check may be needed, too. With a judge's determination, SSA makes it easy to put a guardian over his finances.

He needs to understand that even if his brain is messed up, there are lots of ways to establish a full life. There are others here who are living with severe disabilities, including being totally and permanently disabled by SSDI rules. We just need to reinvent our lives.

So, try to help your family understand the issues he is dealing with. Knowledge can help reduce the confusion and worry. When you can identify a behavior and attribute it to his injured brain, it can be easier to be tolerant and compassionate.

What dysfunctions are listed on his reports?

What meds is he not taking?

There are plenty of good people hear to help and support you.

My best to you.

[Lightrail11]

Hi swingwing and welcome. Sorry to hear about how your brother’s injury is impacting not only him but the rest of the family. As a TBI survivor (also with subdural hematoma with diffuse subarachnoid hemorrhage) I can relate to an extent; I desperately wanted my old life back, and for a time was convinced my deficits were relatively minor and just getting back to my former routine would solve everything. That said, with help, I was able to see that things weren’t “quite right” (I was devastated when my clinical neuropsychologist wouldn't sign a return to work release) so I continued with my therapies.

While you probably can’t force him to see his deficits, the other things you mention (showing him his inpatient and outpatient discharge reports where they clearly say he has far to go, giving examples where he recognizes he has trouble doing things now that used to be easy for him, etc.) certainly won’t hurt; if he keeps hearing specific examples he may come around; that was helpful for me.

I agree with Mark that for your and your parents benefit, attending a TBI support group would be helpful. With interactive discussion and dialog with others with experience dealing with loved ones with TBI, you can make a better informed decision to your question “Do I have no choice but to let him go discover his deficits on his own”.

Here is a book you may want to read, it’s written by the spouse of a severe TBI survivor: Where is the Mango Princess? by Cathy Crimmins

Best to all of you on this journey.

[MommaBear]

Originally Posted by swingwing

...I managed to get him to say this before he shut me down completely: "If I believe my brain is all messed up, then it's over. My life is over."

I want to be able to sit him down and force him to see his deficits, then be there for him when he breaks down. Can I force him to see his deficits? Can I show him his inpatient and outpatient discharge reports where they clearly say he has far to go? He recognizes he has trouble doing things now that used to be easy for him, but refuses to blame the brain injury. His brain is better now, he says, and we are being negative and not believing in him if we suggest otherwise. If we press, he shuts us down and storms away.

Do I have no choice but to let him go discover his deficits on his own, and risk a second TBI, or jail, or worse?

My son is very much like your brother, but somewhat less degree. He also will shut me out instead of listening to me. I can easily imagine how he would think his life is over if his brain is damaged, so he is guarding his deficits. He does need to know that it is counterproductive to do so, and that with cooperation and accepting help and therapies, he WILL get better, it just takes time to heal. It sounds like he will not take this from you, so don't try, but he should be seeing a good psychotherapist to get him to accept and move on and convince him that life will be good again.
I can't ever imagine "letting go" of my son, it seems to me it would be a death sentence. You just know he will sooner or later make some major error that could be fatal -- like falling off a ladder that nobody in their right mind would be on in his condition. (oxymoronic phrase?!) People have the right to make their own decisions, but they also have the right to be protected from themselves when they are in such a state as to cause themselves much harm. So just like the TBI mantra goes, "NEVER GIVE UP!" I'm not giving up. You're not going to give up, find someone professional to convince your brother to Never Give UP. Best wishes!!!!!

[EsthersDoll]

It took me a lot longer than 8 months to realize the bad shape I was in after sustaining a complicated concussion.

Your brother probably doesn't even have the cognitive functioning to be self-aware enough to see that he is having trouble.

I think you and your family are the ones that have fully functioning brains and you need to exercise more patience and compassion with him; especially since you all still have the brains that work the same way that they have your whole lives.

I'm very sorry to hear that he has a short fuse - that's kind of par for the course and will hopefully get better over time. You can't expect someone to go through such a devastating trauma and for them to accept it quickly, especially considering the fact that their mental faculties are not working the way they used to. Shame on his therapist to give up on him. Maybe you should be looking for a different facility to help him instead of also considering giving up on him.

He's still figuring a LOT of stuff out and that can be overwhelming for a person with a fully functioning brain, just consider how hard it must be for your brother who's brain isn't working the way it has his entire life. It sounds like you expect his brain to work the way it used to - that he should be able to evaluate how quickly his temper flares up. You said yourself that his short term memory was greatly affected by this trauma! He might not even realize that he's getting inappropriately upset. And then "he acts" like nothing is wrong... well it's because his brain doesn't work as well as yours does - he's not "acting"!

If your parents can't care for him, then do look into finding him a home where he can receive the care he needs. I read a statistic that states a lot of homeless people are living in the streets because they are brain injury survivors and I don't doubt it at all. I was completely out of my gourd for a long time and if I hadn't had the caring people in my life to be able to put up with me and care for me as long as they did I am convinced I would be homeless now too because of sustaining a complicated concussion. But the people in my life were able to care for me back to how well I'm doing now. I wasn't able to work for over a year! But denial is a VERY COMMON side effect of a brain injury and I don't think it's all psychological having gone through it myself. I think a lot of it has to do with being unable to cognitively assess and analyze a situation.

Please remember, your brother isn't maliciously lying about the jobs he thinks he has, he's not acting and he's not trying to be difficult. They are just examples of how difficult recovery from
a brain injury can be. Blame society for not educating people well enough about brain injury, blame the medical field for not being able to help him more, blame the accident that caused him this trauma, blame anyone or anything other than your brother, because that blame isn't going to do him any good.

[swingwing]

Hi All, thanks for your help and concerns. You gave some ideas I had not considered. We live in California and did attend a brain injury support group a couple of times, which helped us feel better. We were imagining my brother would attend but of course he wants nothing to do with it.

I cannot understate the problem of his refusals. He is not a teenager we can control. He will NOT consider a group home, a half-way house, or a homeless shelter. He told me he'd live in the streets before that. He ridicules the suggestion for a psychotherapist and he will not take medications. He was kicked out of outpatient therapy for refusing to practice his trade there in preparation for independent living, because they would not pay him for the work. This is a man who was self-employed for 20 years, fiercely independent, now living with his parents hundreds of miles from his child and his beloved home town, fully convinced there is nothing wrong with his brain and resentful to anyone suggesting otherwise.

He has been told that this TBI was almost certainly caused by his drinking. Yet he won't accept it, and now after everything he has been through and been told, he says that on his 12 month anniversary he might drink a beer or two.

Our family is running out of money. The thousands of dollars in donations we used to pay his insurance premiums and other needs are gone now. This month we cannot afford to pay his premiums any longer. We are saving what little is left to help him rent a room, and basic other needs.

Apparently in his last tests in a controlled therapy environment, his cognitive performance was fairly average, with only one or two areas in the low average. So he no doubt is making progress, but outside that environment, however, he easily becomes confused and overstimulated.

In February, his impairments were listed as:

- refusals and frustration limiting his ability to return to independent living; requires supervision
- episodes of confusion and agitation; confabulations
- poor memory; decreased awareness/insight into deficits
- significantly poor attention and slow processing speed
- visual deficits (since corrected with glasses)

One problem he seems to have is with reasoning verbally, or listening to verbal reasoning. This correlates with the fact that I have not once ever heard him say, "You're right" or "That makes sense" in my endless hours of dialog and debate with him since this TBI. I believe his ability to process a verbal line of reasoning is very poor, which may explain why he mishears people. He is probably just filling in the gaps of misunderstanding by confabulating.

I think there is a possibility that we aren't being tough enough with him. My parents are not capable. They've had to literally hide upstairs in a room (along with the family dog) during his rants and raves on several occasions. Plus, as the experts say and experience has taught, once a brain injured person "flips", they cannot be reasoned with for a few minutes. His switch flips almost instantly, so it is going to take time. But maybe I can drill it into that something is wrong so that he will actually ask for help, and begin to accept his brain is not better after all. That would be the miracle that we need.

Also, a side note: a year prior to this TBI my brother exhibited behavior that concerned me and several friends, like becoming less organized, making dumb-seeming mistakes, and repeating himself during conversations. I attributed it to stress or drinking, but now we are all asking ourselves whether he did not have something going wrong already cognitively. Perhaps he had a pre-existing TBI. He certainly crashed and bashed himself plenty of times over the years on his job and in sports.

[Mark in Idaho]

swingwing,

It will be helpful if you could tell us more about your brother.
How old is he?
How long has he had a drinking problem and when did he start drinking heavily?
What sports did he play in school?
What activities has he done that can cause injuries of any kind?
Has he had any surgeries with general anesthesia?
What is his trade?
What kind of a student was he? Good grades or just average?
Was/is he intelligent? Intelligent people have the hardest time with cognitive struggles.
What state does he live in?

You mentioned SSDI Has he been approved for SSDI?
SSDI includes Medicare health coverage.

As for discussing these issues with him, It is not a productive effort unless you understand a few things. First, the injured brain will struggle severely to process complex sentences. You need to talk like he is a 4 year old. Simple sentences with only two possible responses. Abstract reasoning is very weak in an injured brain so try to stay with simple concepts.

You also need to wait for him to respond to a simple sentence before you add more comments. Otherwise, it is like trying to wash your face with a firehose. Too much verbal information will cause him to overload and quickly become defensive. The explosions may follow.

If you can help him learn to process and make decisions about simple issues, it will give him a start.

You need to understand the issue of "digit span." This is the number of different items the brain can hold and process at the same time. A 1 year old child will usually have a digit span of 1. A 2 year old will have a digit span of 2. This follow age up to about 8 years old. Some people will continue to increase their digit span into the teens.

For example, a one year old may get stuck on NO. At 2, they may understand No and Yes.

His injured brain likely has a very low digit span at the present time. It takes rehab effort to develop a greater digit span. Poor memory functions add to the struggles with digit span.

So, when you talk to him, consider that his brain simply can not process very many concepts in one sentence.

This should be a start for you and your family to begin to understand him.

There is no way you can push or force him to do anything. The rigid thinking (stubbornness) of TBI will prevent him from letting go of the idea he has. he will struggle to change his mind once he has made a stand.

A better way to talk with him is by asking questions. Help me understand you, is a good way to get him to open up.

I am dead serious about the possibility that he needs to be in a locked memory care facility. His out-patient therapists may be able to help you understand this issue. If his outbursts get violent, he needs to be protected from himself and others need to be protected from him. Your parents should not be trying to care for him. Often, family has a greater struggle communicating with the injured person. Skilled counselors will do much better.

btw, What does swingwing relate to? Were you a Tomcat pilot?

[swingwing]

Hi Mark, great insight there--I have been baffled for MONTHS why he seems to be listening to my sound reasoning and arguments, yet has never once responded as if he understood except to occasionally say reluctantly, "OK." Usually what he does is summarily reject our arguments, then makes his own which are never compelling, and by that time he's upset and the conversation ends. We walk away feeling baffled and hopeless.

I think part of this is he's too proud to admit he is not following, and then just becomes really defensive by standing his ground and giving these really poor arguments in response.

Is there any chance I can private message you on this forum? Some of the information I wanted to share is too private. Thanks!

[katie71083]

Originally Posted by swingwing

I think part of this is he's too proud to admit he is not following, and then just becomes really defensive by standing his ground and giving these really poor arguments in response.

As someone who's been there done that... I'm just gonna throw in here the fact that he may not even have the capacity to realize that he's not following your arguments.

Looking back, the best way I can describe my experience is that my brain could only hold one tiny thought at a time. Most of the time, my one thought was, "I have to keep going." I could only function within that one thought; everything I did or said was related to it.

To keep going in a conversation, one must give signs of understanding. It never entered my brain that I was nodding and responding to people when I had NO IDEA what they were actually saying. It was simply proper protocol, what I HAD to do to support the one thought contained in my brain - keep going.

I think this one thought played a large part in my refusal to admit my problems. To keep going, I could not afford to get ill or experience poor health. I could not add the emotional baggage of dealing with such an injury. I could not afford the mental effort required to process my injury. While these were not conscious thoughts, subconsciously, I realized that such an effort would require everything in me.

Add to this my inability to process and remember anything in general, and you have someone who was genuinely convinced that I was ok. Adamantly convinced. Not faking it. Stubbornly resistant to anyone else's point of view.

All of this is not to scold you - you sound genuinely caring of your brother. Kudos to you! My recovery continues to teach me how hard my injury was on the poor unfortunate folks around me.

However, it is to say - your brother is, in all probability, not trying to make your life difficult. It's probably safe to say he is thoroughly convinced of his stance and completely bewildered by yours. While you are truly and painfully getting singed by the fire of his injury, he is residing within its actual midst. Both of you are suffering.

Please give him the benefit of the doubt in these areas. He needs that.

Btw, I would also second the motion that you and your family need not feel like you have to "go it alone" in your efforts to help him. You are NOT failing him to shift the responsibility onto those who have more ability to deal with this.

I realize that the emotional content of my post may come across as harsh. I don't intend it that way at all!! I cry as I read your posts and am reminded once again of what I put my loved ones through. You are amazing in your evident love and concern for your brother!

I just can't pass up the opportunity to tell you that it is highly unlikely that your brother is being hard to get along with intentionally!

[swingwing]

Originally Posted by katie71083

As someone who's been there done that... I'm just gonna throw in here the fact that he may not even have the capacity to realize that he's not following your arguments.

Looking back, the best way I can describe my experience is that my brain could only hold one tiny thought at a time. Most of the time, my one thought was, "I have to keep going." I could only function within that one thought; everything I did or said was related to it.

Hi Katie, thanks for this honest and really invaluable reply. I feel as though I am treading water, trying to keep from total exhaustion while supporting my own family, while also trying to tow my own brother behind me, unsure I can even help him anymore. I get stabbed in the heart when I think about what has become of his life, and it is driven deeper by that helpless sense of being unable to help him. I know he would never give up on me in this situation, but these brain injuries are unlike anything I've ever encountered.

When you said, "I have to keep going" I got tears in my eyes. That's what my brother seems to be doing. It's like his life crashed and burned yet he does not know it. He keeps moving forward on the momentum he had, but he is singed and smouldering and limping and slowing down. We are all staring at him in horror, recognizing his wounds, but he continues on this march as if he is not damaged. It is agony to watch him struggle to be who was when his brain won't let him, especially around his child.

I still don't know how to hope. I am fairly accepting of the fact that there is no digital backup of my brother prior to this TBI that one day is just going to come back online. He was damaged in ways I don't fully understand.

Is he just going to call me up one day after a series of TBI-induced personal disasters, finally recognizing his problems and finally asking for help?