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Carers UK Forum • Brain Injury - lost about how to get things right.
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Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 2:12 pm
by Steve_1906
Where do I begin? I had a conversation with my partner a few days ago, it was blunt but honest, hard but beneficial and above all else full of love and thought provoking statements on both sides. She had a TBI before we met, part of me wishes I had met her before, not so I knew what she was like back then but because I wish I could’ve been there to support her as necessary. However, a bigger part of me is glad that I didn’t know her before because there are no comparisons to be made, therefore I have fallen completely in love with the ‘new’ her. She is everything I could ever have wished for and so much more. From my point of view I wouldn’t change a thing, but it’s a massive learning curve in terms of how to adjust and adapt to the changing moods, motivation levels and ability to remember and recall details on the short term memory. She doesn’t need looking after in the traditional sense, she’s independent, stubborn and in her own words, ‘a bit of an arsehole at times’! I don’t see her ever as the latter and am getting better at not retaliating and biting back like I used to, it’s not always easy if I’m honest and I do still slip up from time to time (maybe a bit more frequently than that to be fair!). To say I struggle sometimes is an exaggeration, to say I find it hard isn’t right either, I guess it’s a case of letting it become part of our lifestyle. I don’t blame her for any of it, it’s part of her and I love her for who she is, I don’t know if I’m trying too hard sometimes, overthinking and over-analysing things instead of just letting things be. We have an incredibly honest relationship, communication is a very underrated tool, we talk things through all the time. I don’t even know what the purpose of this little piece of drivel is about to be honest, just a means of venting I guess and getting things out in the open from my point of view. Basically...I am totally in love with her, am proud of her and given time...will make an honest woman of her! I love you t@&tnugget ❤️ xxxxxxxxxx

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 2:26 pm
by bowlingbun
Hi Steve,

Welcome to the forum. My son was brain damaged at birth. Now 40, he can't read, write, or do any maths. On the other hand he is fit as a flea, has a photographic memory, and can light up and drive my 10 ton steam roller!!


I never quite know which M I'm dealing with, the 4 year old or the 40 year old, so I can really identify with what you have written. It really annoyed me when he can do something one day, and not the next, until we met someone who had also had a brain injury. He was one of the people responsible for the introduction of North Sea oil rigs, so a very clever chap.

He too had a brain injury, and told me that his capabilities varied from day to day. One day he was driving along, and when he came to a roundabout, for a split second couldn't remember what to do, although he'd been round loads of them!

I know my son gets frustrated at times, and so do I, but it's not his fault, and it's not mine, so we have to do our best.

Have you ever had counselling? You can't change your wife, but you could learn new ideas of how to cope. Especially to pinpoint what you struggled with most, and how you could respond differently.

Be very aware too of your own health. I get very snappy when I'm tired, so now allow myself to go to bed early if I've had a bad day.

I used to get terrible PMT before my periods, if my husband saw me hacking at plants with secateurs he said no plant was safe!

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 3:01 pm
by rosemary
Hi Steve,

Welcome to the forum and for sharing your situation. I am sure there will be others along, like BB, that can offer great advice.
Whilst I hope you will remain with us, there are many places for extra support.

Have you tried Headway
https://www.headway.org.uk/supporting-y ... in-injury/

I have a friend whom joined them and received much support and advice. They have local groups scattered around, plus an online community too.

What is it that you feel you need the most help with?

x x

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 3:19 pm
by Steve_1906
bowlingbun wrote:
Sun Jun 09, 2019 2:26 pm
Hi Steve,

Welcome to the forum. My son was brain damaged at birth. Now 40, he can't read, write, or do any maths. On the other hand he is fit as a flea, has a photographic memory, and can light up and drive my 10 ton steam roller!!


I never quite know which M I'm dealing with, the 4 year old or the 40 year old, so I can really identify with what you have written. It really annoyed me when he can do something one day, and not the next, until we met someone who had also had a brain injury. He was one of the people responsible for the introduction of North Sea oil rigs, so a very clever chap.

He too had a brain injury, and told me that his capabilities varied from day to day. One day he was driving along, and when he came to a roundabout, for a split second couldn't remember what to do, although he'd been round loads of them!

I know my son gets frustrated at times, and so do I, but it's not his fault, and it's not mine, so we have to do our best.

Have you ever had counselling? You can't change your wife, but you could learn new ideas of how to cope. Especially to pinpoint what you struggled with most, and how you could respond differently.

Be very aware too of your own health. I get very snappy when I'm tired, so now allow myself to go to bed early if I've had a bad day.

I used to get terrible PMT before my periods, if my husband saw me hacking at plants with secateurs he said no plant was safe!
Thank you for the welcome and your reply. I have just reread my post and I sound like I’m bad mouthing her and I’m really not. She worries as much about me as I do her, she truly is my world. She is an amazing mum, partner, sister, daughter, friend! She works hard, is thoughtful caring and considerate, I just sometimes find it hard when the ‘switch’ is flicked and in her defence, it doesn’t last long, I’m learning to adapt to the unpredictability and have explained to her how I’m trying to get things right even when it doesn’t seem like it. She is very understanding of it and we have some amazing plans for our future and there are still things I need to be more supportive of, such as her Keto diet which really does make a noticeable difference, her need for early nights and rest. At the end of the day I know I’m the luckiest man in the world to have met her and be with her, I just need to be more patient I think, mainly with myself, as there’s a lot to learn! She sent me an amazing Q&A article today which went a long way to put into words her perspective which is why I am now trying to apply.
https://www.brainline.org/article/lost- ... DiX1zYbfTs

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 3:24 pm
by Steve_1906
rosemary wrote:
Sun Jun 09, 2019 3:01 pm
Hi Steve,

Welcome to the forum and for sharing your situation. I am sure there will be others along, like BB, that can offer great advice.
Whilst I hope you will remain with us, there are many places for extra support.

Have you tried Headway
https://www.headway.org.uk/supporting-y ... in-injury/

I have a friend whom joined them and received much support and advice. They have local groups scattered around, plus an online community too.

What is it that you feel you need the most help with?

x x
Hi Rosemary,
Thank you for your reply. I have made contact with Headway and am awaiting a reply from them. I don’t actually know what I feel I need most help with which sounds a bit silly but I just want to get things right and need to manage my own expectations rather than anyone else’s as my partner is the most patient person ever the vast majority of the time.

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 3:36 pm
by bowlingbun
My son has taught me so much too! He has been on an additive free diet for 37 years.
The only way I could deal with this was for all of us to do the diet too, and we felt so much better that it's just a way of life now.
You certainly don't sound bad about your wife, it's really important to acknowledge your feelings to yourself, and to have somewhere to be open and honest with what you struggle with, to be allowed to say that without fear of people criticising you. Here, we all struggle at times, and support each other.
I have many friends who have an adult child with special needs like my son, it's a great help. If you can find somewhere you can share (and have a laugh with) others on the same journey as you, it really helps.

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 3:41 pm
by rosemary
I find even now that every day is a learning curve. It sounds Steve that just now you are needing a place to express your own feelings and share with others what you are going through. Well you certainly landed at the right place.

Each caring role is different but many of the emotions felt by carers are the same. So settle back Steve and make yourself comfy, always be a shoulder and hand here for you when needed.

x

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 3:43 pm
by Pet66
Hi Steve
Non of what you say sounds silly to me. It takes courage to explain how you feel and that some support would be helpful. Took me a while to admit this when my now late husband was diagnosed with vascular dementia. I've poured my heart out on my own thread and had support from the forum. My own opinion,but it's not a failing to pour out feelings and certainly doesn't mean you love the person any less.
Keep posting and venting when you need.
Take care of yourself too.

Re: Brain Injury - lost about how to get things right.

Posted: Sun Jun 09, 2019 11:48 pm
by Steve_1906
Thank you for the replies, they are greatly appreciated. It’s comforting to find other people who understand and get where I’m coming from. We’ll get there! Just a bit of a random question following on from my original post...has anyone had any experience of taking someone with a TBI on a long haul flight? We did a short flight and had no issues, but have had conflicting advice from various healthcare professionals 😕. Also, does anyone know of anyone who specialises in travel / holiday insurance for those with health issues? Thanks again to you all.