Complete Change after Brain Injury

[Colin _1706]

Hi, my wife suffered a brain injury in September last year and has lost 50% of her vision but i have been caring for her for nearly 5 1/2 years now. She also has Lupus.

We have moved into a bungalow from our house of 9 years which we loved and both cried when we had to leave as my wife struggled with stairs. Its a new start and we will try to make the best of it and i get support from my family and her mum but part of me feels my family partly resent my wife for putting this pressure on me everyday in looking after her and changing my life forever as she was once a well woman although i may be being too harsh or even completely wrong i dont know! and her mum doesnt really get how day to day we are both affected. I too have feelings of wanting away but i love my wife although i feel like a carer nowadays and not a husband. I feel so guilty to think like this. I get carers allowance and luckily we are ok in that respect but id swap it all tomorrow for a normal life with my wife. She always tells me to walk away and sometimes we argue partly down to my frustrations but mostly due to her changes in attitude from her brain injury and she can be very cruel at times and very hurtful.

Any advice would be great!

Thanks

Without my partner/carer I would not survive or be able to carry on. My family are not bothered and wrapped up in their materialistic world.
Underneath all of my personality changes I'm still here and I remember most of the past. I wonder how people cope around me knowing how volatile I can be.
I am so volatile I've lost it in shops when my partner had a problem and staff or a manager were rude or aggressive with her. Ive had the police called on a couple of occasions.
These combined triggers are fairly common with brain injuries:

Tiredness
Hunger
Pain

Gareth I know how when all three of those items are present that I can become really nasty and unpleasant. I don't even realise that I am doing it because my head is do tired, I'm hungry and in a high level of pain. It's like tunnel vision.
Ive become a virtual recluse because I know how I can be and I don't want to inflict me on anyone else.
My partner has her brain and spinal health problems and she can become very nasty and foul mouthed too. I can see the signs before hand so I can do things to avert or to avoid the fall out. She is the same with me.

There are times I wanted to walk away. I did once and it pains me very greatly that I did. I came back to her a few days later. I couldn't leave her to cope on her own. When she phoned me she was in bits.
Who was I to judge her?
I still feel the pain of what I did to her by leaving. We learned to work around each other and learned to recognise each others signs.

It is hard to tell someone that you need them and that you can't live without them. Too complex emotions to say those things and not feel like a budren or want to be a burden.

I will tell you the truth that on your own you have two chances. Slim and none.
There are many organisations and individual people who see you as an easy target just because you are disabled and on your own. The authorities will take you down. The world changed in the last couple of decades and too few actually care.
Society became increasingly polarised with the selfless and the selfish.
There is a much greater spiritual side of our lives that most people don't consider.
Some people call it karma, ying and yang etc
I know my partner would struggle on her own without my support. The authorities would more than likely take her apart without me to support her because they can and they will. My family wouldn't help her and her family wouldn't either. My personal stance is no matter how hard it gets I will not walk away again.
Sometimes you don't get even one chance to go back.
But sod everyone else's opinions. Plenty of judges out there. Be your own council in these things because only you know the truth. Your head can be decieved in all sorts of situations but your heart cannot.

[Nikiya]

I've been reading this thread with interest. A friend of mine is recovering from a brain aneurysm, and it's early days yet, I know, but something is a bit "off". She's just ... not quite right, but it's difficult to put my finger on quite what is different. She always could talk the hind leg off the proverbial donkey, given half a chance (quite a few times, I could be on the phone to her for half an hour and barely get a word in edgeways!), but at the moment her delivery is a bit monotone, and she will carry on and on talking as if ... what? She's afraid to stop? A bit lacking in empathy, or engagement with others, perhaps? (I know I've seen something similar before in elderly people). She may be missing some filters, too - or perhaps she really doesn't mind discussing quite personal things with people she doesn't know that well (maybe a stay in hospital does that to you!). She may also be suffering some short-term memory problems, or it may just be that she rattles off things to her audience but doesn't actually retain what she's previously said and who she's said it to, because she repeats herself from day to day quite a bit.

What's concerning me at the moment is that her cognitive and discriminatory processes don't seem to be functioning at full efficiency, yet she has plenty of time to sit/lie and think, and I'm concerned about where some of this thinking may be leading her - she's getting a bit fixated on situations which I suspect she's misinterpreted. I'm keen that she not take decisions/come to conclusions now which may come back to haunt her later on when, I hope, she will have recovered (although I do realise that this might be a permanent personality change). What, I wonder, is the best approach to take with someone in this sort of situation? I'm thinking the best thing to do might be the equivalent of dealing with an epilepsy attack, in that you try to head them away from doing anything which might harm them or others, and then just wait for them to recover.

[Colin _1706]

Hi Nikiya,
I recommend you to talk to Headway and certainly read the info on their site. They describe some of the symptoms of brain injury.

Headway - the brain injury association | Headway https://www.headway.org.uk/

I find myself talking onwards mechanically often because I can't remember what the point of the conversation is. It's hard to close what you are saying without looking stupid. I have a big lack of confidence in verbal communications too, this means I struggle to maintain social conversation.
These are all typical of brain injury.
But I feel OK to write things.

The effects can be subtle and complex.
During the neuropsycholigy tests I had, I scored in the upper 90th percentile of language and communucation, but I struggle badly with normal conversation.
Other parts of the test I scored upper 30th percentile. So that's quite a disparity for one brain.

Sometimes just patience and lots of caring is all you can do. It's hard not to want to kind of take over conversations for us. But that doesn't help with our confidence.

Loss of sight of the boundaries of acceptable discussions or acceptable behavior is a significant and common part of an ABI.

One of the frustrating aspects of my ABI is that I cannot remember names. Some might say that's just getting older and although I am 59 my memory of names is seriously bad. Like town or road names, shop names, medical professionals names, movie names, TV program names.
We laugh about it because often that's all we can do....

Another of my symptoms is that I completely lose all recognition of where I am despite being somewhere that I know very well. Fortunately this happens rarely but it is quite upsetting for me.

The first time I was driving through Coventry on a route I know like the back of my hand when instantly I didn't know where I was. I drove round and around Coventry totally lost on roads I know very well. It was quite scary tbh.
Eventually my brain kicked back in out near Stoneleigh after 1 hour solid of driving, when I instantly knew where I was again. As I said that's a bit scary.

I know it's hard for people to understand an ABI generally. So that's why I recommend Headway.

The person who has the ABI sometimes needs to learn who they are all over again. This is more difficult with older people who were very used to themselves in any situation. Now I don't know me so well I don't know how I may react to any situation, social or otherwise.

I hope I am not offending anyone, but I am relaying my own first hand experiences.

[Colin _1706]

Again just to help people understand how a brain injury can effect people.

For a year or two after the road traffic accident when I nearly died on the day and had to be hauled back. I genuinely thought that something subtle was different with the world. It felt like the world was different in many ways. I wondered for a while whether I had died and come back on a different time line?

But eventually I started to realise that it wasn't the world that had changed, it was me that had changed. My perceptions as a result of the ABI had changed. How I saw the world was different because of the brain injury.

[Nikiya]

Thank you, Colin. I think I had already read the Headway information by the time I posted, but even so your clarifications make a lot of sense. Thank you for making the effort to put them down.

[Colin _1706]

Hi Nikiya, I hope me giving a bit of perspective would help. The thing is brain injuries can get better over many years, the synapses can reconnect.

Being a friend for them is a really helpful. No it's not easy to be around, but that's when I learned who my real friends are.

Same with me, I'm there for other people with major health issues to help and support. Sometimes just being a rock to someone who feels like their world is turning upside down. Being empathic isn't such a bad thing.

[Nikiya]

Thanks once again, Colin. I'm pleased to report that my friend is finally starting to sound rather more like her old self, which is good, although we're clearly not out of the woods just yet!