Hello and advice for my dad

[Lauren_1006]

Just wanted to introduce myself and see if anyone has been/is going through something similar, as even though we have the whole family this experience can be so isolating!

My dad was in a serious car accident in Feb this year. He’s been in a coma for 10 weeks now. The impact meant serious damage has been caused on the left side of his brain in most areas. We’ve been told not to expect much in a way of recovery and that it’s likely his speech and language will be impaired in some way. His GCS score has improved over the last few weeks and is now around 10-11.

3 weeks ago dad (Darrell) was weaned from his trache and we had 2 brilliant days where he was more conscious and even spoke a few words, however since then he’s been more sleepy, unresponsive and only rarely makes sounds, no more words.

He is due for surgery in 2 weeks for a cranioplasty as his head is so sunken and is now causing pressure from the outside in. Has anyone had experience of more positive changes after a cranioplasty or can let us know what happened?

Hopefully after he’s had this he will be moved to a rehab centre.

Just feeling so helpless. Our mum was also in the car that crashed and is currently in a wheelchair with broken hands, elbow and left leg. And due more surgery. My sister and I are having to care for her and we are both pregnant with young children already! (I’m 24 weeks with a 3 year old and my sister 21 weeks with a 2 year old) to say this is hard is an understatement. Most days we can’t see our dad as the hospital is far away and we can’t always get childcare.

Was wondering if anyone here has survived or had family who survived a traumatic brain injury as bad as my dads and what long term recovery has been like? What was rehab like? What can we do to help?...I know everyone is different, I just want to hear some experiences of others in our situation.

Look forward to talking to anyone who can help/offer support.

Lauren

[steve55]

ive had 2 friends who have had this operation, but neither were as bad as your dad.

i have a brain injury and i am a different person now to the one i was before, but well cross that bridge when we come to it.

its probably fatigue thats causing your dad to go back to sleep something i still suffer from 6 years on.

if you need any further help or you just want to let off a rant youre more than welcome and remember yours and your sisters health is just as important.

steve x

[Lauren_1006 in reply to steve55]

Thank you Steve. I’m hoping the operation may help but suppose we have to wait and see. 10 weeks seems so long but I’m learning that with brain injuries it’s early days.

I hope you don’t mind me asking but I’m what ways do you find you’re a different person? X

[steve55 in reply to Lauren_1006]

in the early days, before iwas put on meds for my mood swings, i caused my wife to have a melt down. the gp refered me to a psychiatrist and ive been diagnosed with a personality disorder, i also have epilepsy, noise intolerance, hate strangers or my routine changed, inappropriate behaviour and i swear consistantly except when im typing or writing because i have to concentrate.

for me though, ive managed to come to terms with my brain injury and im on a new journey, where will it take me who knows, the person looks the same but...................then who knows it could be the same person who comes out of the coma.

my thoughts are with you and your family

steve x

[Lauren_1006 in reply to steve55]

Thank you Steve for sharing with me. It sounds like you’re coping well despite these difficult changes to your personality but sounds like you’ve got a really positive mind set which I’m sure goes a long way! You’re a credit to yourself x

[steve55 in reply to Lauren_1006]

lauren mine was 6 years ago. i still see a psychiatrist, ive got a new neurologist whos absolutely brilliant and my gp is learning how to deal with people with abi.

something you may also find useful, is looking up your local monthly headway group. there you will meet people with bi and get to listen to their stories first hand and just as importantly meet the angels who put up with us and listen to them and learn how they deal with different scenarios, oh and its also fun x

[Lauren_1006 in reply to steve55]

Sounds good I’ll have a look but don’t think there’s anything local to me unfortunately x

[sca2013]

Yes, there is a tremendous amount of fatigue with brain injuries, which like steve55 said is very likely one of the things causing your Dad to sleep more and not be very responsive, even though he was initially. Know that all brain injury recoveries are different as to how fast or slow things happen. The reason I tell you this is because even if someone's injury was exactly the same as your Dad's it doesn't necessarily mean your Dad will experience the same recovery path. Just take things one day or hour at a time as things can get overwhelming, especially in the beginning. Just do the best you can and if that means you aren't able for whatever reason to do all you want to , make it ok, and know you're doing the best you can. Please take care of yourselves so you can be at your best as trying to be there for others when you don't feel well will help no one. Know you're not alone. Visit this group at anytime for support and ideas. Also you may want to call Headway for suggestions on how to handle things too. Their number is 0808 800 2244. Also here is their website that contains plenty of great information on many subjects related to brain injuries, families, etc. headway.org.uk/

[Lauren_1006 in reply to sca2013]

Thank you. I have been on the headway website and read lots of helpful information. X

[Susan3535]

Hi Lauren, I really feel for you. My daughter had an accident July 2017... she was only in a coma for 4 weeks though... Unfortunately until they wake up fully you don’t know what you are dealing with. My daughter fractured her hip pelvis and base of skull. TBI Severe frontal lobe damage and total shearing to left hand side of brain. The doctors didn’t tell us much, it was just a waiting game. As she slowly weaned of the drugs , she had to learn all the basics again, walking, talking, eating and using toilet etc. but the brain is fantastic at healing. She spent a total of 11 weeks in hospital, 9 months on she is doing fantastic. I compare her to when she came out of coma until now, the journey has been slow but going always in the right direction. I admire her for her strength and positive mindset. You know your dad better than us all, he knows you are there battling with him. One thing they keep repeating to me was the brain is healing while at rest. So take this time to rest also as your dad will need your support when he comes round. Not sure if this helps, if you want to send your email address I can send some pictures and videos of my daughters recovery.

[Lauren_1006 in reply to Susan3535]

Wonderful to hear your daughter has made such a brilliant recovery she must be a strong person! And you too. Thank you for sharing your story with me. I know everyone is different but it gives me some hope xx

[dawny]

I'm so sorry to hear of the terrible accident, I send love and strength to you all.