Feeling Lost

[Amber]

HI, My Brother was found on Oct. 22 after an accident at his home. He lives alone and we are not sure if the accident happened 1 or 2 days before he was found. The good news is he has survived and is out of ICU, the bad news is he's been diagnosed with TBI/frontal lobe bruising. On Nov. 2nd they moved him to Acute Rehab.

This is all happening so fast I'm not sure I understand all I should about his injury, what will be involved in his recovery or how long it may take. The doctors are not even sure he'll make a full recovery, only that he will need several months of rehab before they can say how permanent or severe the lasting effects will be. My brother lives in another state from the rest of his family and is not married. Complicating matters is that my Father had a breakdown when hearing about my brother and now he too is in the hospital. I'm a single parent and have been helping my Mother with my Father and unable to go to even visit my brother since he lives 20 hours away. This is a total nightmare.

I've spent every available minute of every day since this happened doing what I can to help save my Brother's home, business and health insurance. I fear he is going to lose everything. On top of this the Rehab he has been in for the last 6 days is already pressuring us to make arrangements for him to be released! They say since he is "physically" mobile he doesn't qualify for their inpatient care. They basically compared him to a bus, his case worker said "he's like a bus that is going down the road and the driver is on the sidewalk". Apparently as long as the "bus" can move the insurance company and rehab facilities don't think loss of cognitive functions are adequate reason for inpatient treatment. He still needs 24 hour observation and care not to mention daily therapy. The only good news is they cannot release him without my approval because I am his health care proxy.

Anyways, I guess I was just looking for some advice from anyone who may have been in the same situation. Even if you have no advice it sure would be nice to be able to talk to others who have dealt with a TBI.

Thanks for letting me vent,
Amber

[vini]

hi amber

sorry to hear of your brother,s injury and the effect it is having on your family,it is a waiting game I am afraid every case is different and its a matter of coping stratagies until the extent of healing is determined, and this takes time, if you can keep your brother in therapy this can only help, but if there is no option than he be discharged then he will need a support system and a nuro psychologist and it is only a nuro psychologist who can say he is well enough to go home, this TBI is called the hidden injury here in the uk I was lucky enough to be sent to a organization called headway who are helping us I lost my job and nearly our home , but they put me intouch with the social services to sort out my welfare claims as I could not cope , so if there is a organization in your brothers state contact them they will give you the help you need and perhaps put your dads mined at rest

and of course this board will help all we can,see if your brother can log on to this site, when, he is able, it will help him cope

kind regards vini

[Kevin Jackson]

I hate to hear that your brother has become a member of or exclusive club of TBI:o.
Well my thought is that every emotion, depression,anxiety,sleep,balance,mood swing, anger,interpersonnal relationships,receational intrest,ptsd and so on. Become multiplyed 1,000,000,000 times.Of every 30minites of every 24hour day,7 days a week, 52 weeks a year,365 days a year, All thoses emotions at once. Even when things seem to be back as normal, they aren't. Don't lie to your self or him. Theses are problems that will be their for the rest of his life. Be pateint, stay basic in explinations. Stat small and build. Always remember to congradulate and show positive respondsis in every thing achived or attempted. In ways we are childrend starting over in some ways. Only the caricture of the statue who he was has changed.
Good luck:D and best wishes along your jounery;)

[Amber]

Thank you Vini and Kevin for your kind responses.

Vini, I wish I could find an organization like "headway" here in the States. So far every place I contact cost money :(

Kevin, one of the things that is soooo very frustrating is that none of my Brother's Doctors can say to what degree he will recover. I am told that he could make absolutely no progress from this day on or he could make a lot of progress, they say after one year we should have more of an idea.

I finally got to go visit my brother and I can honestly say it was devastating to see him. On the one hand he looks fantastic, he is totally mobile. He is very strong physically and able to perform all his own personal hygiene needs, he has most of his memory from prior to the accident and has some decent recall for his short term memory. What he lacks is any understanding of what has happened to him, he doesn't believe he has a brain injury. He insist that he only had a headache and is very very angry and hostile because we wont let him do whatever he wants. I tried to explain that he needs to let us help him and go to his therapy sessions but he just keeps asking "why?" and saying "This is Bullsh*t". I'll explain how he has been in the hospital for almost a month and what happened to him and then he'll turn around and say "no, I've only been here a week". He doesn't understand that he cannot drive or go back to work. He doesn't understand that he needs to take medications and have someone with him at all times.

His inability to understand these things frustrates him so he keeps yelling at us and arguing with everyone, including his nurses/doctors. Matter of fact he almost never talks in a calm voice, instead he is always curt, rude and just plain pissed off. Does any of this sound familiar to anyone here?? Will my Brother ever do back to being the kind, gentle soul he used to be??

This is most difficult and I hate to admit it but I couldn't stand being around him, things are just that bad. For now we have found someone who has agreed to care for him 24/7. But this even this person has already called me saying they don't know how long they will be able to care for him because of my Brother's attitude. This was our only option since he refused to come back with me and he needed to leave the Acute rehab. I guess I'm rambling now, this is just all overwhelming and I don't know what more I can do for him.

[vini]

hi amber

it was hard for me to except cause I couldn't remember the injury but i did know i was doing strange stuff try to get him to log on and have a good vent he may well improve with time he is walking talking so be thankful for that he will realize that he an.t right but no one likes to be told that if you are able for him to take it easy for a while it will do him good I whent back to work and it mucked me up you say the word nuero psychologist and I thought shink ####@## I,m not crazy and he is not ,don.t give up on him he may well recover but its not over night read the link on neuroplastic recovery and work and try to get him to see a nuero psychologist they ant shinks that will help him
kind regards vini

[Kevin Jackson]

Well I have found that in society. We are taught to not show pain in any form. Its cosidered a sign of weakness. And beleivie it or not. Will be treated that way. Whether or not their conjust of doing so. The people your conversing with that is. And no one wants that. When you think you feeling good. So it does seem to get flustrating at times. It felt good to get up some mornings and feel as if I was as freash as a new born pup. And in 30minites or less Feel as if I hadn't slept the night before. The first thing is the fact that things are differant. And that in it self is hard to accept.Their times when I know what it is I'm trying to get understood. And know what I'm talking about.But the person I'm speaking to does not understand. And that can be flushtrating. I had to realize that some of what I was saying wasn't comming out as I thougfht it was too.
well good luck
don't give up.:)

[where_r_u_dad]

I know is has been a while since you have posted here but I hope you will read this and post again. This is the 1st time I have ever posted to a blog site/forum so bear with me.

My dad had a motorcyle wreck in June 2008 and he was not wearing a helmet. Among all his other physical injuries the TBI has been the worst. we never could understand it completely and still don't to this day. I feel like I need to reach out and start find people out there that feel like I do. It is horrible to watch how angry and off the wall he gets over tthe simplest things. When you were explain the actions of your brother I felt I was reading my own post. The bad thing is we are 7 1/2 months out since my dad's wreck and he seems to have gotten worse. He refuses the pychiastrist appiontments because he is not "crazy" and he refuses medicines becasue he thinks they don't do anything. He has even gotten to the point now where he thinks everyone in our family is out to get him and all his money. so he thinks he needs to pull all his money from the bank before we all 'drain' him. this is all just crazy to us and hurts us becasue that is not what we are doing at all. We encourage him to take his meds because I think it will make him feel better but he won't do it.

Kevin thank you so much for being here and sharing your thoughts and experiences and also everyone else that has as well. I am learning from all of you what to do in a difficult situation as a caregiver. I want my daddy back so bad that I am just at a loss as to what to do.

thanks for any and all posts!
Missy

[JRA]

I myself suffered a frontal loabe injry along with tempral lobe and can relate to your brothers problems. I would suggest you find a local support group they may know of options in your area . Its also a great help to get advice from someone in person .
I would also suggest you speak with a lawyer(probono) about him recieveing SSI or any other healthcare he needs.

[dawnmn]

I know it's been a while since you posted your questions.

From what I learned in rehab is that it is common for men to be more angry because of their TBI. It's a side effect for the injury but they need to learn to control that anger.

Have you tried the brain injury association in you state. They are a great resource for helping in these kind of siturations.

[vini]

I know it's been a while since you posted your questions.

From what I learned in rehab is that it is common for men to be more angry because of their TBI. It's a side effect for the injury but they need to learn to control that anger.

Have you tried the brain injury association in you state. They are a great resource for helping in these kind of siturations.

thanx dawn thought I would post link http://www.biausa.org/stateoffices.htm

[Kevin Jackson]

Don,t flustrate yourself. If you visit some of my pass threads. I discuessted 5 keys of coping skills. The first is acceptance. Sure a lot of us say ok theires a problem. But were ok. But the problem is their, we just try to hide from others and ourselfs. Put yourself in his shoes. You feel great some time and can take on the world. 15 minits later,so tired,angery,flustrated, and cann't figure out why. That would make you angery. Let him go as far as he thinks he can.(NOT IN A WAY THAT WOULD BE HARMFUL). He must see the truth for himself. The anger and flustration will possiby incress. But him must feel and understand why.

[Amber]

Thank you all for sharing your stories and trying to help me understand what my brother must be going through. It's been 5 months since his tbi and he is doing much better. He stopped fighting with his care giver in early January. It had gotten to the point where we just had to let him go back to his house by himself in order for him to realize that he could not fully care for himself. Once we gave him that little bit of freedom I think reality began to sink in and he has been staying with his partner ever since and going to see his doctors willingly.

It is very difficult for him. I think he resents me and other family members because we have not been able to help him more. Sometimes when I talk to him it seems he resents the whole world. From reading some of your post it helps me understand what he must be going through a little better, how frustrating it all must be for him. He did end up losing his business but he has been able to return to work part time and is in the process of filing for disability/medicaid.

The best news though is how much he has improved. While he gets confused and overwhelmed easily and still can't drive he is almost totally self sufficient and I can tell he is trying to keep his anger in check. It takes a lot of effort but I can tell he is trying to use that filter that tells those without tbi that they cannot just say everything that is on their mind. He is understanding better the consequences of inappropriate actions. He understands how serious his injury was and that it will take time before he is able to fully function without any assistance. It's a little difficult to explain all the progress he has made, but I wanted to check back in here and try and share with all of you how he is doing, especially since you were so kind to share your stories and advice with me.

Thank you again for all your support.

[vini]

your most welcome amber see if your bro cant log on some place this forum is a bit quite but there are other sites if you would rather he joined there:)

[papadrew]

I had my TBI back in 1967 and have had left sided paralysis and drop foot since. Anger always comes out in rage. PTSD is a whole other thing I've recently discovered. Your brother will need to have a comfortable ear to listen, shoulder to lean on and space. Suffering a TBI is like making a complete 180 in life because suddenly everything is different. I was only six when I was injured. My experience is that everyday is a challenge, like for anybody, and acceptence is the answer for me. I hope your brother is well on the mend!!

[smokingun35]

Thank you Vini and Kevin for your kind responses.

Vini, I wish I could find an organization like "headway" here in the States. So far every place I contact cost money :(

Kevin, one of the things that is soooo very frustrating is that none of my Brother's Doctors can say to what degree he will recover. I am told that he could make absolutely no progress from this day on or he could make a lot of progress, they say after one year we should have more of an idea.

I finally got to go visit my brother and I can honestly say it was devastating to see him. On the one hand he looks fantastic, he is totally mobile. He is very strong physically and able to perform all his own personal hygiene needs, he has most of his memory from prior to the accident and has some decent recall for his short term memory. What he lacks is any understanding of what has happened to him, he doesn't believe he has a brain injury. He insist that he only had a headache and is very very angry and hostile because we wont let him do whatever he wants. I tried to explain that he needs to let us help him and go to his therapy sessions but he just keeps asking "why?" and saying "This is Bullsh*t". I'll explain how he has been in the hospital for almost a month and what happened to him and then he'll turn around and say "no, I've only been here a week". He doesn't understand that he cannot drive or go back to work. He doesn't understand that he needs to take medications and have someone with him at all times.

His inability to understand these things frustrates him so he keeps yelling at us and arguing with everyone, including his nurses/doctors. Matter of fact he almost never talks in a calm voice, instead he is always curt, rude and just plain pissed off. Does any of this sound familiar to anyone here?? Will my Brother ever do back to being the kind, gentle soul he used to be??

This is most difficult and I hate to admit it but I couldn't stand being around him, things are just that bad. For now we have found someone who has agreed to care for him 24/7. But this even this person has already called me saying they don't know how long they will be able to care for him because of my Brother's attitude. This was our only option since he refused to come back with me and he needed to leave the Acute rehab. I guess I'm rambling now, this is just all overwhelming and I don't know what more I can do for him.

Amber,
My heart goes out to you! The frustrations your brother is experiencing are similiar to what I have seen with my son. It's now been nearly a year and my son is taking siezure meds, siezure free now for 8 months on meds. He is driving but I hold me breath every time he leaves becuase I am afraid he will have a siezure while driving.. He also has a prosthetic polymner plate the size of large mans hand a of 6 weeks or so ago.. I feel your pain! We have another child and we often neglect him due to issues with the 18 yr old. The Dr's we saw initially told us our son would likely never be able to be self sufficient.. I think they are all full of $hit as he is driving, going to tech school etc but with that said he still deals with a lot and gets really mad and frustrated.

I wish the best for your brother, you and your family!