Can anyone who has had a TBI resulting in amnesia, explain to me how your memory came back?

My boyfriend had an accident, he doesn't appear to have regained his long term memory after 5 weeks. I would like to understand how memories return. Do they come as flashbacks, vague feelings of something past, little segments like a jigsaw?

I am not allowed to see him, write to him or send him cards or photos. We were together for 5 1/2 years and I spent more time with him than anyone else, but his family are insisting I stay away because I will confuse him. They think he has to remember his family and children first, which he hasn't. I would have thought that you can't force someone to remember you but by not allowing him to remember me, I am worried that this could impede his recovery.

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  • I lost my memory as a result of 30 courses of radiation to my brain. I can tell you how it was for me, but am not saying this is how it is.

    Firstly I would like to say I disagree with your partners parents in an enforced isolation.

    My memory loss was total, with a few exceptions; I remembered my dog, and became obsessive in that she had to be with me or where I knew she was at all times. I remembered my partner who had died a year earlier, and sort of remembered who my two brothers were, but no detail. I also remembered where everything should be in my home, and if anyone moved anything I would become extremely emotional.

    I had a hectic life before, full on job, living between London and Brighton, becoming ill I chose to live in Brighton rather than London, best place for my dog to be. I could not remember most people, and this was very frightening for me, as people would call or I'd meet them in the street and they would begin talking to me. This panicked me as I had no idea who they were why they were talking to me, and mostly how come they knew so much about me??? A world with memory loss is a very frightening place. I overcompensated for my memory loss by getting in first and chatting ten to the dozen, leading the conversation so they could not ask me questions. I forgotten I had two homes so forgot to collect rent from my lodgers, forgot I even owned my home, Watching television one day saw an advert for home insurance, so promptly insured my house; every time I saw an advert on home insurance, 5 x in total. My memory came back very slowly, and your quite right when you use the phrase jig saw and vague feelings, I did not have too many flash backs. I was constantly working out what was missing, often not realizing what was missing. When everything is new and extremely frightening, it is exhausting, I loved nothing more than to close the door, and go to bed by 6pm with my dog in my arms...no questions and no sudden surprises that frightened the life out of me with my dog I was safe. it is a very lonely world when you loose your memory; I would go by body language and becoming familiar with people and places all over again. I was also a danger to myself, started cooking became tired and fell asleep; set the kitchen on fire twice, with my little dog barking to wake me up just in time. I was ripped off financially by people. Before the fire incidents I'd made myself ill by not eating, just forgot all about it. It was only my consultant asking why I had lost so much weight that she then carried out investigations into my weight loss and found I had been starving myself.

    Memory returning for me was very slow years not weeks. I might suddenly remember someone or something about someone. The first year was the worst, the second year things were getting a little better, it is not only the memory loss but social niceties, I could not understand why people wanted to shake my hand or touch me, for a long time if someone touched me I would make a hasty retreat go home and sometimes cry distressed that people were touching me. After two years I thought i was 'ok' but knew I was not totally recovered, I met someone and we became friends, after a little while he suggested he stayed the night I agreed without knowing why beyond keeping each other company. Another frightening experience. It has now been 5 years and while I think I'm ok, still have gaps in my short term memory, which I find just as distressing, as however over it I think I am my short term memory still lets me down.

    Without knowing you or your partner I would think that once it is medically safe for him to leave hospital the best place for him would be in his home before his memory loss, with life as it was going on around him, with a built in escape area for him ( a room of his own), as if he is anything like I was he will spend lots of time on his own exhausted. Do you have any idea why his parents are acting in this way?

  • Hi Brighton88

    Thank you for sharing your story, it is shocking and sad and I really feel for you.

    My boyfriend was working in Egypt at the time of his accident so now he is back in the UK he has no home as such. We didn't live together - I had to be here for my daughter and he stayed in his home to be near his children until work forced him abroad. But saying that he spent a lot of his time here with me and I also stayed with him as much as I could.

    He was always very comfortable here but I live 2 1/2 hours away from his family so if he goes to live with his parents when he is able, I won't be able to see him as they have said I can't.

    As to why they have done this I can only say I think they blame me for him going to Egypt and therefore it's my fault he had the accident. It seems someone has to be to blame and in this case it's me.

    I was allowed a few minutes with him over a week ago and that is all the contact I have been allowed but I believe there was something - a flicker of recognition, a vague feeling that he knew me.

    I don't know how he is, don't know if he has remembered me, don't know if he has been asking for me which tears me apart, what if he thinks I don't care.

    I don't even know if he is getting better.

    I just pray he will remember me or he will be lost to me forever.

    x

  • What an awful situation to be in. Maybe do a recording for him, not sure how you would do that in todays technology.

    My memoery was pants. It was hard work figuring everything out. I would be chatting about things and to me it made perfect sense, to everyone else i was rambling nonsense and repeating things many times over.

    Ieither didnt eat or ate till i felt sick, didnt smoke or chain smoked till the pack was empty, I found life confusing and its like you know your in the right place but you just cant figure what you should do, i remebered somenames but not others. Some memories are like photots others are like video clips kind of.

    I was told its like having a filing cabinet that has been shaken up and the paper has gone all over the place, some bits have gone out the window and wont come back, some are hidden down the back of the drawers and will take a lot of time and work to get back, or might just pop up out of nowhere. The majority will take what seems like forever to sort out into some semblance of order,. It takes time and there is no hard fast rules.

    I set the house on fire and i fell getting out the bath, i watered the bathroom and landing because i run a bath then lay down and fell asleep. I burned so much food over the years i lost count. I get easily distracted and completely forget the cooking or what ever else im supposed to be doing. I get lost in places i dont go to alot, like more than once a week. If i dont go somewhere for a while i cant find my way all over again but i do have the sense of being in the right place. I often lose the car in car parks because i have to concentrate so much on shopping. I do manage tho.

    Maybe you need to go to the hospital and leave a note for the doctors so that they know of your involvement.

  • I had my TBI in 2005. My husband used to come to see me in the Rehab. Centre, and he'd bring our lovely toddler, and a very cute little baby. I really enjoyed playing with her, but I'd ask him every day where her mum was. Every day, he'd say "She's ours. I told you that yesterday!". It must have been so scary for him!

    7 and a half years later, I still don't remember her being tiny, or us moving house so that we'd have room for her. The important thing is, though, that I love her to pieces. My day-to-day memory is (thankfully!) fine, now, but I'm still missing a few years of memory (2 years before, an 6+ months after the accident).

    I am a university lecturer. Thankfully, my memory of all the science I dealt with has not been affected.

    I believe that every brain injury is different. if you go to see him, he might be relieved to see you and give you a big hug, or he might not know you. But I think you should be allowed to try. It is unfair of his parents to exclude you.

  • Hi everyone

    Thank you for your replies - I really appreciate it.

    Great news - this morning I have received a call from the hospital following a call I made last week. I have the Matron's permission to visit him!!!!!!

    They are looking at me visiting him out of visiting hours so I don't see the family.

    The Matron says the only person who can say I can't visit is him.

    I have read many stories online of people in a similar situation as me and maybe if they had looked a little deeper into what is being said to them like I have things could have been different.

    The whole Next of Kin situation is built on myths and hearsay and needs to be made clearer in my opinion.

    Anyway right now I'm waiting to hear when I can go but I'm so relieved and happy I want to dance around lol!

  • Good for you. Still look into leaving recordings for him. It really might help. You know his likes and dislikes and his personal preferences to music etc. these things can make a big difference.

  • I completely agree on the Next of Kin issue. My Dad suffered a catastrophic SAH in August last year. He is remarried and so his next of kin is his wife, initially my brother, my Nan (Dads 90 year old mother who has all her wits about her) and myself were only allowed information as long as the next of kin agreed. If I rang for anything I was told I would need to speak to the next of kin! His Mum, my Nan was watching her beloved Son in a coma and nobody was willing to discuss the situation in any detail with her. She was and still is frustrated and feels very excluded, as we all do. I think I would have completely lost my temper if it was my son! Although we do speak to Dads wife it is so upsetting to be told you are not important enough to be given any information.

  • Wonderful I am in this situation but his family has whisked him away to another hospital out of the state he was originally in. I tried with lawyers, advocates and many others but they just refused me. They used incapacity along with saying he did not remember me. We have an established religious marriage and common law partnership out of the country, although the hospital refused to acknowledge me even though we have the exact same address. It is the worst thing to go through. He was able to see me one time and at that time he was so happy to see me. He hugged me , kissed me held my hand and mouthed that he loved and missed me. Yet I am not allowed to be a loved one in his life. This is one of the worst thongs to ever happen to me in my life.

  • I'm in the same situation , Boyfriend of 4 years also the Father of my Two kids was in a Motorcycle accident 2 years ago, His parents do not let me see him or talk to him. It's very devastating , I think I get blamed for the Accident As well. I wonder also if he thinks of me suffering a injury to head that badly , I do recall seeing him after 6 months of being away from him and he remembered me as his girlfriend , could not put a name to my face but knew who I was. Anyway I can legally see him and have him interact with our kids, His parents have guardianship over him and don't allow me to make contact ... They both are doctors and seem dictate everything ..any help will do

  • I am so sad for you and the children. The laws must be changed. There are too many blended families in the Wedt for us to continue living under these ancient myths as next of kin. They must include those people that are involved in their lives! Ontario, Canada has done so! It is time others follow suit. I hope your situation improves.

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