TBI how to cope with confusion of a loved one with tbi

[kandy0616]

hey guys, ive messaged on here before a while back and i just need some help. my partner is recovering from a bad motorbike accident, and unfortunately is suffering from a TBI and spinal cord injury. When he first woke up you couldn't tell he had brain damage he remembered who i was he seemed so with it. But the more time has gone you can really see his cognitive mind is damaged. He has his good days but also has his bad. For example he will call me his ex's name sometimes; is this just a muddle up in names or does he actually think im his ex? when i do correct him, he does feel so bad then i feel bad for making him feel bad. Another thing is he asked me to massage him and as i was doing so, he looked at me in shock and shouted 'who the fuck are you, why are you touching me get off me...' (he is still in hospital, just waiting for a refferal for a rehab unit). Then there's the verbal abuse and blame for everything. But in his good days hes really good. He does say to me he dosnt remmeber much about us apart from the love and emotons and feelings he has for me. in his words, 'i cant remmeber much about us but i remember i love you and want to spend the rest of my life with you' hearing this is so reassuring but the bad days, i cant help but get emotinal and end up crying. Any advice or experience as a tbi survivor or loved one of a tbi survivor? Will his memory and confusion improve at least? Can i do anything to help him? The brain is soooo complex

[Hidden]

Hello kandy0616,

It’s such a difficult situation for you both and my heart goes out to you. My daughter suffered a traumatic brain injury 4 years ago and she said she knew who family and friends were but didn’t remember her relationship with them so much and felt as if everything had been erased, like a clean slate, if that makes sense. It’s reassuring that your partner knows he loves you and has feelings for you, hopefully knowing that will help you through the more difficult times. I think as time goes on the brain injury survivor knows who really loves and cares for them as they are the ones who have been on the journey with them. As each brain injury is different it’s difficult to know what the future holds but things improve with time and I would try to live in the present moment as much as possible.

Make sure you get as much practical advice and help from the hospital before your partner is discharged to the rehab unit. Also, the Headway Helpline is a great source of help and can advise of counselling etc in your area, should you feel the need.

Do keep in touch and let us know how you are getting on. I wish you all the best, 👍🤗

[kandy0616 in reply to Hidden]

awwwh noo im so sorry to hear that! i hope you guys are all ok now! the brain is so complex and hard to tell the outcome its so hard. I really hope so i dont want to be under the statistic of failure in relationships due to tbi so i will deffo hold on to the fact his feelings are still there for me. thank you for taking the time to reply to me honestly it means so sooo much! wishing you all the best and yes will keep you updated! sending my love to you both xxx

[New_beginning]

Hello part of this resonates, It does get better I feel stronger emotionally being the wife/carer of survivor. Its a continuous slow, rough process you will be a different person with this too,, deep breathes, stay strong I'm still in process adjusting as only 2years, x

[kandy0616 in reply to New_beginning]

Aw i hope so! And well done you, i know what you mean by it changes you, i can see a change in myself. Staying strong is a must because if i start crumbling, he wont get my full support so im trying not to over do myself with stress and running around but just balance out the stress and im guesing this stress in just the begining of a long journey ahead. But saying all this i am not giving up on him.

[New_beginning in reply to kandy0616]

I crumbled at 19mths date it was the inevitable, now 5.5months later just recovering, I view our relationship different in a positive way as aware statistics high for relationship breakdown with TBI, I feel very proud despite our situation we're like glue. I view people different as they will never understand and now I wouldn't expect them too. I did rehabilitation all at home from nursing, PTA stage so feel pretty confident in what I do or what challenges to put on list. It does get better, it won't feel like it is for a while but in 2years time you will see the Progress, I'm not entirely sure we can progress much now, but room for improvement on dealing with situations x

[kandy0616 in reply to New_beginning]

awww thats so beautiful replies like this really give me hope for our relationship! im glad its much better than how it was when in hospital. aww you guys are cute 'stuck like glue' this really gives me hope! thank you for taking the time to reply to me xx wishing you both the best!xxx

[paxo05]

Hi Kandy,

I can only give my own insight how I was. Although this is based on what I have been told I said at the time.

The first few years after my bi things are hazy. I feel that I thought I had I instinctive feeling towards people without actually feeling anything.

I felt worse with my children as I thought I should love them unconditionally. With my wife I think I had feelings but she felt like a stranger.

Trying to muddle through these feelings led us to part for a while.

Suddenly on separating help came out of the woodwork. We had special relationship counselling and learnt to open up and be honest.

After 14 years of marriage we started dating again. We cared for each other but had to learn to love each other again. I realised I had changed ( not always for the better) and had major anger issues.

I can't say it was easy but it's nearly 23 years since my bi and we are still together.

My wife had to love the new me and I had to make sure my feelings were not just dependency.

At the time I would change several times a day and not remember who people were. This got better over time I learnt to accept others memories of what had happened and also trust what others had said had happened.

Hopefully he will accept the changes in himself and learn to adapt to the new him.

Unfortunately there is no magic formula. Take every problem one at a time. It is still early days. If you both acknowledge there are still feeling for each other ,well that is a good starting point to build.

Sorry for long answer but it is a complex issue hopefully what I have written will help a little,

Pax

[kandy0616 in reply to paxo05]

no dont apoligise there is no such thing as a long answer tbi's are so complex as you said. im glad youve reached a point where youve accepted whats happened to you and your living with it that is such a brave thing to do if u ask me, im sorry to hear about your experience and i thank you very much for taking the time to reply to me. this has been a real help and i wish you all the best!

[Dogsabighelp]

hi,you poor girl,my heart goes out to you.so young to be dealing with this,(not like there is ever an age)you will hear others stories here,they all different.i would say connect with a couple of people on this forum who you feel may be able to support you.it matters not about the circumstances,my experience is that all are different.you will find yourself going through range of emotions dont ever be afraid to ask for help.my best wishes and love to you bothxxx

[kandy0616 in reply to Dogsabighelp]

aww thanks for the reply it means so much just taking your time to reply to me. i deffo will this forum is such a help and its nice to know im not alone in this. best wishes to you too!

[sue-66]

Hi kandy, my husband had his motorbike accident in 2017, he had numerous breakages, cardiac arrest and different bleeds in his brain. He was in a coma with a negative diagnosis from the professionals, to the point of wanting to withdraw treatment twice and not repairing his broken pelvis until 5 weeks in. He has defied all odds and now nearly 5 years later lives well. We weren't married to start and married 2020. Even now, fatigue plays a part with his memory. His short term is not very good and will say he doesn't remember us or getting married, but a positive is, when looking through photos, they can jog a moment. We have learnt to live with his memory and any other physical changes and get on with life that works for us both.

If you have photos of the pair of you, then show him them, take time out for you also. At the start it's an emotional roller coaster for the pair of you, him from the injury and you taking the weight of it all.

Hang in there ❤️

[kandy0616 in reply to sue-66]

aww im so sorry to hear that! what a journey youve both been through! Im happy to hear your both happy loved up and married! This reply really has given me so much hope for our relationship it makes me feel like we can beat the odd of relationship failure due to TBI and im over the moon you guys are ok. He has his days were he blames me for everything and accusing me of all sorts. But whats reassuring is on his good days they are so good and hes apologetic and loving even wants to marry me, i think now through time i understand he cant help it and ive become more of a patient than before and i think because i am very empathetic person which helps. Thank you so much for taking your time to reply to me you dont understand how reassured i feel. I hope you guys live happily ever after!