Family

[Negeen]

We all know that brain injury is the least understood medical disability, by both medical professionals and the lay population. But I was wondering, does anyone have a family who is actually understanding and supportive?

[clivekeen]

I have been trying to tell my 81 year old mumy Abi brain injury and disability after almost 5 years still does not understand I look ok nothing is wrong even my wife and grown up kids understand but not fully for my disability got there own ideas but can't accept my side know what's it's like

[Negeen in reply to clivekeen]

Omg ur not alone. My parenta have been pressuring me like crazy to go to college and I have showed them the neuropsych report where the doctor wrote that I showed a zero percent learning curve and they're still pressuring me- because like you- I look tottally okay.

[Holyjo]

I think I am part of a supportive and understanding family. We have a son who has a brain injury. Your question has made me reflect a little.

[Negeen in reply to Holyjo]

That's really great to hear Holly. Brain injuries are isolating, nothing is more uplifting than having loved ones who understand and are supportive.

[RogerCMerriman]

My folks/wife are supportive. I have my off days even now and yes I look fit and well which I am physically.

[Negeen in reply to RogerCMerriman]

Everytime you speak about your wife she sounds like angel. What a blessing to have such a supportive partner.

[RogerCMerriman in reply to Negeen]

She's a good woman. She says she can see in my face how tired I am. I look skelatool apparently, I guess it matchs the zombie walk!

[Thandiwe]

I have attended every appointment with my son and I give feedback on problems that he is not aware are a problem. That way the Neuro has been able to recommend coping tactics etc. We have tackled the head injury as a multi faceted problem, how to deal with no smell/taste, bowel problems etc etc and then all the ways to improve memory and how to cope with the stresses and strains that are thrown up. We are pleased to say that three years later his tests have improved phenomenally and he is now working. We still deal with 'the injury' and discuss each problem as a challenge - often just needing more sleep or more use of lists and "siri" on the phone.

By attending appointments and reading up on head injuries meant that as a family we could be supportive and understanding, this has helped incredibly in the way my 28 year old son is now able to face life's challenges and succeed.

Parents/partners/family need to understand the hidden injury and all its many problems - that way they can help to be the 'bandage' and help in the healing.

[Negeen in reply to Thandiwe]

Amazing! You guys sound great!

[Bards]

My family are more mindful of my fatigue issues than I am; they know I'll do my Icarus impression if they don't diplomatically engineer some 'down time'. I'm fortunate, and can't say I'd have been so sensitive if it was the other way round...

[Negeen in reply to Bards]

That is really good to hear.

[ricozoe]

from the day my anyerysm ruptured my daughter changed our roles she became like a mum to me,i have been so lucky all my family have been n are still there for me ,also my friends.

[Negeen in reply to ricozoe]

Aww your daughter sounds very sweet.

[Jennaberri]

My family have been fantastic and probably understand my behaviour and the fatigue better than I do. My closest friends are amazing to, the all treat me the same as they ever did but understand that I struggle with some things. My partner, on the other hand, says he understands but I'm not convinced. I have a similar issue, because I look fine and don't have any physical disabilities he behaves like I should be ok. He gets annoyed and angry when my emotions are out of control, he's even said "but your ok now".

[Hidden]

NO.SEE RECENT POSTS ABOUT MY "SISTER" DAD CAN'T HELP IT DUE TO HIS DEMENTIA..

THEY WEREN'T SUPPORTIVE BEFORE, THEY NEVER COULD UNDERSTAND WHY I COULDN'T DO THINGS THEY JUST THOUGHT I WAS BEING SELFISH.

[Nks425]

I have been very fortunate to have my husband and kids not really kids I guess since they are 21& 17.

I think everyone responds differently.

My daughter and husband at times will push me a bit. They challenge me to do more ,

My son always asks how I am and how the day or night is has been. I think they all deal with it differently just like we do. It's hard when you really look like all is well and they can't really see the damage . I think communication is the best thing.

I know it's hard but just try to explain maybe using the internet to show what kind of issues you have and what type of problems go with your brain issues.

Good luck and hugs and prayers

[Negeen in reply to Nks425]

I've explained to them numerous times- but i'm so well spoken that it's just hard to believe. I explain my cognition issues to them, but then I explain it in such detail that it kind of undermines my point that there is something seriously wrong. Cause in their opinion if there was something seriously wrong I'd be much more ovbious.

[Nks425]

It's a shame. You can't tell with me if I 'm just sitting but if I have to get up my balance and my speech if you knew me before . If you did not know I guess you would think my speech was just a bit slow :/

[Negeen in reply to Nks425]

Hmmm are there balance exercises that can help you?

[Hidden]

My family really struggle to understand as I too look ok and sound ok. They just don't get it at all and put down my sometimes erratic behaviour to me being moody or bad tempered. It is very isolating. I am so glad to see that other people here get good support from their family.

[Dorsetcharlie]

Both our families have been consistently patient, empathetic, curious, understanding, good humoured and kind. We are very, very lucky :o)

[Negeen in reply to Dorsetcharlie]

That sounds great! You are lucky indeed!