Dad has a brain injury. 4 years on.

[jbraxton15]

Hi all,

New to this forum. Four years ago my Dad (now aged 53) fell down a flight of stairs in a central London bar. He was rushed to the Royal London Hospital and was in a coma for two weeks. A few weeks later he managed to escape from the high dependency ward (true story..) and somehow made his way home. He suffered a very severe brain injury (front of head) and his life has been totally transformed. He was the CEO of a film company, he now spends his days sat at home unable to work and is clearly very depressed. He finds it hard to communicate with people, especially in big groups. I live a couple of hours away but try to see him as much as possible.

Initially my step mum arranged for him to see a physio (he has pretty much lost the use of his left arm) and made sure he kept his doctors appointments. He had a carer that used to visit twice a week and he also used to attend some group meetings. He even spent a month in a dedicated brain injury centre. The improvements were slow but encouraging and his confidence was steadily increasing. However since then he has suffered numerous seizures which has erased almost all of that progress. 4 years on he does not see anyone about his recovery and it seems like the general consensus (of Dad and my step mum) is that this is how things will stay - that this is his lot in life. I understand that progress after such a long time is less likely to be made but it is hard for me to accept. I cannot influence what he does or what treatment he should receive which is a horrible feeling. It is still very hard for me to accept that this has happened to one of the most important people in my life.

My question is after such a long time what long term improvements, if any, can be expected? Is there anything I can do when I'm with him that will help? I always take the time to listen, talk slowly, ask questions (mostly about things that I know the answer to) just to make him think and remember things. His long term memory is pretty good but short term it is very patchy.

Thanks for reading this and any help would be truly appreciated.

- James

[razyheath43]

just keep doing what you are doing,the brain does reapair! encourage him to contact headway,sometimes a less formal approach helps.short term memory can be helped with setting timers,and writing short notes,all the best

[cat3]

It's so hard for families to have input when their parent has remarried, I know, and you have my sympathy James.

I wonder whether you've spoken directly to Headway ? They can open up doors that most of us don't have access to and have specialist people who can help.

If you'd like to phone the helpline, the number is 0808 800 2244 (9am-5pm, Mon-Fri). You'll find a sympathetic ear and some good advice there.

All best wishes, Cat x

[randomphantoms]

Hi James

You sound like a wonderful son.

Do you know if the seizures have been investigated?

I can't tell from your post whether you truly believe that your dad and step mum are agreed they "this is his lot".

If they are agreed there may be good reason for it and maybe asking to be included in their reasoning and/or how they have interpreted any reports.

You could talk directly to headway especially if you know your dad's diagnosis and get a better understanding.

If all else fails it could be about you learning to accept the changes.

Please get in touch with headway.

Love n hugs

Xoxo

[Hidden]

Hi

I think that Cat is on the right lines when she suggests contacting Headway - they are very helpful

Unfortunately from my own experience it can take time for you to see some improvement in your dad even after 50+ years my brain still goes on holiday at times

Best wishes

[jbraxton15]

Thanks for all your feedback. I really appreciate it!

razyheath43 - I will see what I can do but chances are that Dad won't contact Headway himself. That would be a really positive step though. He has seemingly given up hope of sustained recovery and the injury has made him extremely stubborn. Writing notes is a great idea. He used to do that in his initial recovery and it definitely helped him. He was better at communicating what he wanted to say on paper. Now he has just uses the same phrases or words. Maybe writing would help add to his current vocabulary.

cat3 - Yes it is very tricky when it comes to my step mum. We don't really get along (yet in front of dad I make sure that we do). So that along with not living there means that I'm a bit out of the loop. For example when he has a seizure I hear it about it third hand through my grandparents, some times days later. Which isn't very nice IMO. I haven't spoken directly to Headway but I think I will give them a call later this week x

randomphantoms - Thank you for saying that. If anything I need to do better. I vowed to make more of an effort visiting and doing what I can to help improve things. Even if the improvement is minimal it is better than nothing at all. What I meant by the "this is his lot" comment was that before the 2 year mark passed (where we were told most progress would be made) my step mum was always pro active, sorting out physio, booking rehab places etc. Now days there is none of that and her attitude has changed. For example she sends him to my elderly grandparents quite often, some times for a week at a time. She has also made a passing comment to my Nan saying how at the time of Dad's fall things weren't going well in the marriage and if the accident never happened they may well have split. I have no idea why you would say that to your in laws but there we are. I don't like the drama of families, I just want to focus on Dad. I understand what you are saying about accepting the changes. Honestly it has been very hard for me in private, I still can't believe that this has happened. With that said it has happened and I'm not one to sit around feeling sorry for myself. I feel sorry for Dad and that is what is heart-breaking for me. x

dillm2 - Really appreciate the message. What techniques have you used in your recovery? Also, if you don't mind me asking, if you have ever been down about your injury how have you dealt with that? It might help me understand how Dad is feeling / how I can help cheer him up. If that is too personal I understand.

[cat3]

James, I meant to ask earlier about your dad's seizures. You seemed to suggest that he was doing quite well until the seizures started, but then deteriorated significantly. Has he had help in getting the seizures under control ?

Also, how is his mobility ; is he able to walk at all ?

My thinking is that we are all susceptible to depression when our lives have become limited by brain injury, and if the seizures have knocked your dad's confidence so badly, any depression will have been reinforced.

So perhaps there might be a possibility of drug treatment to relieve any depression and, together with successful epilepsy meds, who knows what the outcome might be.

Just thinking 'aloud' really ........................................... xx

[jbraxton15]

I meant to address his seizures actually, I think someone asked about them previously. According to doctors they should not be happening so regularly (if at all) and they should be able to be supressed by the right medication. The problem is that they have not been able to find a medication that stops them. As far as I am aware they have stalled looking and from the outside (which is pretty much what I am) it seems as if this situation is now accepted and that it is just about knowing what to do when a seizure happens. I don't think this is very positive and goes back to my point about the 2 year window. People keep telling Dad to be positive but any help he has enjoyed in the past has ceased altogether. I guess that is what I find hard to accept.

Yes, he can walk. He isn't the quickest and finds some tasks hard because of the his bad arm though.

I agree with you about the depression. I mean who wouldn't be depressed? Whenever I'm feeling bitter about the situation I just remind myself that he has it so much worse. I just feel so bad for him, it is a very sad situation.

He has to take a lot of medication at the moment (I can't remember the exact names) but I do know that one of his pills is to do with epilepsy. They sometimes up the doses. I'm not great with medication myself so it is all foreign to me but apart from the continued seizures the doctors seem happy with it.

A side note to do with the depression and seizures is alcohol. He doesn't drink too often but finds himself at home bored. He sometimes wanders to a local pub, which we have all told him is a bad idea. Even a few drinks now is dangerous because of his meds and his tolerance levels. There is a direct correlation between him having a seizure after drinking the day before. He has been hospitalised a fair few times now. This is the one thing I sympathise with my step mum about. She has to work so it is almost impossible to track his every move via phone. I guess it is tricky for everyone involved but I do think there needs to be a renewed effort to make some positive changes. xx