new - how can I help him?

[help4hubby]

Hi there,

I am new to this site! I am trying to find help for my husband, myself and our family. He had a MVA on 6-19-07, lost conciousness...and we have been struggling ever since. This was his 2nd accident in little over a year; THe first he did hit his head too, but had not brain problems, instead had a spinal injury and resulting spinal fusion; just as he was finally well, he was slammed from behind at a stop sign by a driver who had fallen asleep at the wheel.

We are dealing with post-concussion syndrome or TBI - is that the same thing? He is totally out of it the majority of the time; his short term memory is shot; he is totally angry and short tempered most of the time, disoriented, forgetful etc; the biggest problem are the HORRIBLE headaches - they will not go away - we are trying many things, nothing had gotten rid of the headache - some affect his mental state; What have any of you tried for the headaches - Im trying to compile a list of possible meds to try and review them with his doctor - they have tried a few of the stand epilepsy/migraine meds to no avail.

I am honestly just beginning to accept that this is real too that he is not just going to snap out of this and be fine tomorrow - our whole life has changed - I feel like we are living with a stranger; I do not know what to do for him. I am angry a lot as is he; not angry at him - but I know it comes out like that; he cannot work - so I am the only one supporting our family and we are just barely making it; he cannot drive so he can no longer help ick up the kids like he used to; he cannot even stand to be around the kids for more than 5 minutes - they are 6 and almost 2 years old - he says they drive him crazy - I know he isn't meaning it meanly but it sure comes out sounding mean and it hurts - not to mention I am doing "it all" by myself; he used ot be so wonderful - we had one of those real split relationships - it was 50/50 on eveyrthing care for the kids and housework etc - I know do it all (barely) and take care of him too - I don't know how to do this all and help him!

Wow that sounds like a poor me - I am sorry I know he is suffering and many of you are too - WHAT CAN I DO TO BE A GOOD CAREGIVER???? How do I get the best care for him and keep my job and my family?

Help me - tell me anything!
thanks
Lisa

[Discododi]

Hi Lisa,
I am so sorry you are going through this right now. My situation is different, but my family went through the hell of brain injury recovery. Nov 2000 I had emergency neurosurgery to remove a colloid cyst of the third ventricle. I had developed severe hydrocephalous, and was having headaches so severe, I could only relieve them by trying to sleep.

My recovery was very "surreal" to me, in that I was in a sort of "dream" mode. I was taking anti-seizure medication because I seized in post-op recovery. I had a bad reaction to dilantin, and had to be switched to other meds until the "lights" started to come on again. I did not talk for 10 days after my surgery, and I had to take speech therapy in order to re-learn how to form my words. All this with a brain that was trying to re-wire and remember who I was, who my husband, son and people I love where as well. It was a night mare in many instances.

Looking back on it now, my faith in God, my husband, and son, and my family helped me through everything. I had to have a daily list of things to do once I went home from the hospital because I did not trust that I could remember to get my 7 year old son to and from school, feed him and take care of my other responsibilities around the house. My husband has told me it was like I went away, and he suddenly had our son and a new baby to take care of.

I wholeheartedly suggest you research Brain Injury Support Groups in your city. Get as much information on brain injury as you can. Yes, behavioral changes are a part of the brain injury. For a while after I came home from rehab, I had to go daily to a group called Adult Day Health in between my outpatient therapy sessions. This allowed my husband to go back to work, and it allowed me to continue with therapies I needed, and to have some supervision as well.

Recovery from brain injury is a very difficult road. There is no set timeline, so people sometimes tend to give-up. I feel the brain continues to heal the rest of our lives, and that subtle changes will be noted throughout. Please let your husband know you love him, and let your children express this with him also. Let the kids know dad had a brain injury, and that he is healing, and that his temper is affected by the injury.

There are a multitude of books out there that deal with brain injury recovery. A couple I will suggest are: Over My head by Claudia Osborne, and Miles To Go Before I Sleep, by Jackie Nink Pflug. Both of these books give a very personal, and "real" since of what the brain injured person is experiencing. (Challenges, and triumphs)


Please continue to come here for support, as well as search other support groups either in person (you can find your local Brain Injury Support Group by looking in your local phonebook. Most cities have one) or on-line. Knowledge is the key. Many marriages cannot survive a brain injury. The statistics are alarming. With faith, love, and understanding, healing happens for the person with the Brain Injury, AND the family.


Best Wishes to you and your family, Dodi

[Jim59]

Hi Lisa,
Your in a tough spot. I had a massive TBI from a car accident on June 10, 1984 when I was 26. During surgery I had a stroke and was left paralyzed on my left side. Nothing anyone can tell you, including myself, will really help. I can tell you that in time, years not months things will be better. Twenty-three years later things still change for me in positive ways. I recently learned something important that my family realized soon after my accident but couldn't put into words in a simple common sense way. The personality of Jim on June 10, 1984 died. I still look the same and have many of the same physical mannerisms that I did, but my personality including things like my old value system are completely different. I had lots of headaches too but in time they subsided. I started on seizure medication that day and still take it and will for life. I was single at the time and my current wife knows only the Jim of post 6/10/1984. I had an open head injury where my skull was broken open and it sounds as if your husbands was a closed head injury. The two are very different and can create different issues for both. The Social Security system with it's disability component is quite kind to head injury victims because it's not something you could fake. Apply for SSDI, Social Security Disability Insurance as soon as possible. It requires a lot of paperwork but provides a decent cash benefit that would help you and your family through this financially. Your husbands anger should also diminish with time, but be sure that each health care provider knows about any anger, personality changes, etc, from now and for the rest of your lives. Many things can be caused by medications and changes in medications. As a caregiver you will become the expert in noticing even the most subtle changes in your husband. Hang in there for him!!

From Jim who began his new life after June 1984