TBI - lack of insight & awareness

[R310898]

My father has a TBI (Traumatic Brain Injury) after a major accident 3 years ago. The journey has been long and distressing with many different and difficult stages. He has recovered from being in a coma to learning to walk, speak, eat, move again, but the impact of his brain injury on his mood, aggression, cognition and memory continues to bring new challenges each day. He was recently sectioned for very poor mental health, and his short-term memory is deteriorating. He was discharged home but then re-admitted to hospital again after an incident with cooking. One of the hardest parts now is the lack of insight and awareness he has into his brain injury. He is so confused as to why he is in hospital, he is very reluctant to take his medication or engage with support. We, as his family, are completely lost as how to support him.

Has anyone else got experience with lack of insight/awareness into brain injury, or any tips on how to support someone ?

[James1984]

I had a brain injury over 27 years ago, when I was 13. I recovered amazingly well given my damage, but because I was so young at the time my body bounced-back. Nevertheless, I still had a long recovery period and still have issues to this day.

I do deal with a lot of forgetfulness and my symptoms vary a lot, meaning, I can function very well when I'm at my best, yet I can deteriorate quite rapidly. Some days I can go all day, and others I need a sleep for a couple of hours at lunch-time. It really depends on how much I do, conversation, socialising, environmental factors like heat/humidity etc.

For these reasons, I sometimes tend to think I can do more than is possible, so I end up cranky/tired and get on the wrong side of people I deal with.

I try to manage my days better these days, taking into account how hot it's going to be, the tasks I need to accomplish, where I'm going to be, and who I'm going to be around. I don't feel the need to keep up with other normal people, and so I go about my day at a more relaxed pace.

I think the key to making him realise is to get him to slow down and have a plan for his day. Let him slowly come to realise his life is going to be different, not bad at all, but he needs to embrace life in a different way at a different pace.

[Leaf100]

hi R31,

I'm sorry your Dad and your family is going through this.

Lack of awareness is part of the scenario, especially in the early days.

I am 16? (I stopped counting) years out, and I am still becoming aware of things. The good part of that is often it happens when I've progressed, and I can tell by the difference.

3 years is still fresh ish, believe it or not. It's concerning of course, about the appearance of things that look new. It's hard to tell, with bi, what exactly this means - for example, the mental health issues would have an impact and also when people try harder or get really tired or just cause - they can have time periods that seem backwards.

Looking back I feel what helped me with the awareness was keeping a journal. Not anything too involved, just maybe how I felt , what the weather was, did I have a headache, a note about something significant. You could maybe even ask him and keep it for him to start with. The repetition may help him make it his own.

For me, it wasn't that my short term memory wasn't working, it was that I didn't have the ability to focus my attention enough for whatever it was to get into my memory in the first place.

You could speak to Headway and see what other testing might be helpful. I saw a neuropsychiatrist for a bit and he was really key in helping me understand what was what, and he also could separate mental health issues from injury issues. Since medical people in general are quite often not up on the difference, I run into quite a few people pegged with psychiatric issues who don't actually have those issues - it's just that's what the doc that was available, who didn't have adequate training, thought. So, from my limited view, I feel seeing a neuro psychiatrist would be great for your Dad . The doc will know what issues are from the injury and what issues are mental health related, and can also rx and monitor appropriate medication. A lot of people benefit greatly once they get the right medications.

This is often a frustrating journey as it can take time and a lot of advocating for our loved one, or ourselves, to get to see the right people - 'right' meaning the ones that go aha! try this! and it helps,

Keep us posted.

Leaf

PS keep talking to him , read to him, hearing a familiar voice can help a lot, even if it doesn't seem to