Wife just had a TBI a month ago 4/22/15

I am seeking info and help for my 54 year old wife who had a traumatic brain injury.

On 4/22/15 she fell and had a subarachnoid hemorrhage of the right parietal and left temporal. A contusion of the sub frontal. Interventricular blood.

She spent 2 weeks in the hospital and is home now. She is mostly all there. She can walk with just a little unsteadiness and some numbness to one foot. She has poor short-term memory. Has emotional labiality. She has a lot of fatigue, and sleeps 14 hours a day. She cries a lot, and has bad headaches and dizziness.

She is on anti seizure meds. Fioricet for headaches. She has speech therapy 3 times a week.

I just am seeking information. The doctors have been pretty much useless and tell me nothing, other then it will take time. I am a nurse and have a decent understand of what a TBI is. I just don’t know much about recovery and what treatments and therapy might be indicated.

Any advice or experiences would be helpful.

Thank you, lost soul

Start with the video section on this site, lostsoul (click the media tab above). Some of the videos should be helpful to you.

Hello Lost Soul, welcome. You've come to the right place.

Everything you have described is pretty normal for us. I'm still dealing with the neurofatigue (which makes you sleep 14 hours a day and tire out after the simplest tasks), dizziness, headaches, and memory problems. I had my TBI 3 years ago slipping on black ice and cracking the back of my skull on concrete.

-- First of all, I want you both to take it easy on yourselves...and MAKE others do the same. This is a hugely dramatic life change for you both, and with it is going to carry a lot of grief, sadness, anger, and frustration as she relearns to do things.

-- You are both on the same team. Your wife is feeling every bit as confused, upset, and worried about how to fix it and under tremendous emotional pressure like you are because you both love someone who has been hurt and there is nothing more awful than watching someone you love suffering. In this case, that loved one is your beloved wife and her own beloved self. Try to direct your anger and frustration at the TBI and never each other.

-- Trust what she says. If she says she can't do something or is unsure about something, trust her to be telling you the truth. The worst part about this from my experience is that people flat out never listen and try to override your best judgement. We get the "Oh, come on, just a little more!" and the "You could do it yesterday, why not today?" and the "I KNOW you can do it, do it yourself!" a lot. Symptoms come and go in severity, so if she can do it one day and not the next, that's normal and to be expected.

-- There's going to be a lot of mishaps, dropped balls, and misunderstandings. Things are going to go all to pot occasionally. Take time out when you're ready to blow and go find a quiet spot to relax. Shake the stress from your muscles, breathe, fix it, remind yourself this is normal, and move on.

-- Be prepared for a huge lack of understanding. That's going to be par for course from doctors, friends, family, and whatnot. Brains are still quite mysterious and NOBODY knows how it works. You're going to encounter well-meaning and not-so-well meaning people who will give you a lot of unasked for advice, bunk, lectures, and dump their emotions on you and your wife. They will constantly try to push you past your limits or berate you both to do this or that or whatnot...do not let them. They can and will severely burn you out and put your wife in danger and hurt your feelings. Keep your boundaries solid and thank them but tell them you will be following your medical team's advice.

-- At this time you're going to find out who your friends and family really are. I hate to say this, but we often lose a lot of people we thought were friends and it hurts. Let yourselves grieve and remind one another that you have each other and cherish those people who stay. Do not waste energy on people who aren't willing to say "I don't understand what you are going through, but I don't have to. I'm here for you."

-- LET THEM HELP. Remember as a caretaker to make yourself priority. When you need time off, call on the friends and family you trust and then make relaxation for yourself a priority. In our country we're very independent and hard working people, so asking for help and relaxing is really hard for most of us. That's gonna take a lot of time and training to get comfortable with, but it's really, really important you get a network of various people to share the workload between you all with the doctor's appointments and things.

-- Doctors really do very little about that brain and yes, they are useless. Focus on getting your wife to practical application type specialists that work directly on retraining functions. Neuropsychologists, speech therapists, physical therapists, occupational therapists, and hunt for those who specialize in TBI's. This forum is a good place to start.

-- It sucks not knowing what the future will hold, but always that no matter what happens, that she can still have a 100% wonderful life. It might not be the same life she once knew. She might not regain the full span of her previous abilities. But a new normal will emerge, new solutions will be found to your problems, and it WILL get easier over time. Practice relaxation...it's going to be a necessary help. Things will may be different, but they can still be amazing. Believe it or not, I am happier now than I ever have been in my life even though I am differently-abled.

I'm running out of energy to keep typing, but if you have any specific questions, please don't hesitate to ask. This place has been a lifeline for me in terms of information and support. Really good bunch of people here with good advice.

You are not alone.

thank you Laurie and Madere,

Every day is an adventure. Things seem to be improving little by little.

It is pretty much just me and wife, no family in 1000 miles. We have a few friends, but they are more acquaintances.

I find the lack of concern or caring from the health system to be bizarre. No one cares. Paying them makes no difference.

SO far she has speech therapy. That is ok, but it is really just a few coping skills. There really is no need for physical or occupational.

It is about time and waiting to see how she does. I have no idea if she will work again.

We are trying to get the neuropsych testing. Doctors have ordered it, but finding a provider is difficult. It seems that my insurance co is not wiling to pay the in network providers. Amazing.

From what I can see, neuropsych is just a way to find out what deficits a person has. (also what abilities) I dont see any treatment that would be recommended. So it would then become just a way to document to be presented to disability or whomever.

Still early in the process and lost in the fog

Lauriel, I try to message you, but it did not go thru.

Hi lostsoul - I think Lauriel's comment is good, as is her advice. My husband had a tbi 16 years ago. I'm happy to be a sounding board anytime as I know well how difficult times can be. One thing that is important is to find someone (may go to a support group to start with) who is in the same or very similar situation. Talking to people who don't know what you are going through can be frustrating as brain injury and its affects are so complex. Anyway, feel free to message me

Hi Lostsoul, I had something similar 4years ago. What I can share is this will be a life long process. But for now, especially when communication is difficult crying is the one outlet for her. Being there for her, even if you are not necessarily doing something will mean the world even if she can’t say it the way she would like to. You will need to muster up as much PATIENCE as you possibly can. This is a long journey my friend. Progress happens, sometimes not as quickly as we would like so celebrate those baby steps. Keep your friends close at heart. For me I can say initially I had short term memory issues. I am out 4 yrs and am facing bouts of other types of memory issues which tells me it changes with time at least for me. And headaches. But I celebrate what I have, we all have to no matter the obstacles. My heart is with your wife and yourself. I don’t know if I helped. Patience, love, and more patience. Please do not forget to take the time you need to replenish you! Much love and light to you both.