![What Happens to Relationships After Brain Injury?](https://www.brainline.org/sites/default/files/styles/full_view_image/public/migrated/001_0.jpg?itok=RCjuKAqJ)
Many survivors and family members describe changes in their relationships after the injury. They may not hear much from friends, co-workers, and extended family members. Others notice that their phone calls, emails, and letters are left unanswered. Some survivors find themselves feeling alone even when they spend much of their time with family members or friends. Here are some of the things people say about their relationships after brain injury. Do any of these statements sound like things you have said?
- I can't relate to other people. It's easier to be by myself.
- What happened to all the friends who came to visit me in the hospital?
- Other people don't want to be around me.
- People seem to avoid me.
- My wife threatens to leave me at least twice a week.
- I wonder why no one returns my calls.
- It seems like everyone at work has lost my phone number.
- I haven't talked to anyone in weeks.
- Nobody cares about me.
- I don't have any friends.
- Seems like nobody wants to talk to me.
- Nobody has any idea what I am going through. They don't understand me.
Why people feel lonely even when around family members or friends?
After injury, many survivors describe feeling lonely — even when they are surrounded by other people. This loneliness may arise for many different reasons.
- Difficulty talking to other people or understanding what others are saying are common problems survivors face after injury. Communication problems can make relating to other people and explaining your thoughts and feelings very difficult. These problems can lead to feeling misunderstood and isolated.
- Many survivors feel self-conscious after their injuries. They may worry about being different or less capable than other people. Self-consciousness can make it harder to spend time with other people or seek out new relationships.
- After injury, many survivors worry about what others will think of them and may feel nervous about being around other people. They may be afraid of being hurt or rejected by other people.
- Many survivors notice they are more irritable after their injuries. When irritated, they may say or do things they regret later on. Some survivors try to stay away from those they care about for fear of behaving poorly. Family and friends may also avoid you if they are worried about what you might say or do.
- Fatigue and low energy are common problems after brain injury. Survivors may not have the energy to do things they used to enjoy or to spend time with friends and family. Family and friends may also worry about tiring you out when they invite you to do something.
- Pain and other physical problems often make it harder for survivors to do things they used to enjoy. You may also have trouble leaving the house, traveling, or visiting other people. Injury-related limitations make it harder to nurture and build relationships.
- Many survivors are not able to drive or work after their injury. Lack of transportation and money may make it hard to visit others or do things you enjoy.
- People generally make friends through work or being involved in social or recreational activities. After injury, survivors often stop working and may not be involved in sports, church, and other activities. You may lose contact with friends and co-workers because you don't see them as much.
- Friends and family may feel uncomfortable because they don't know what to say, how to act, or how to help. Discomfort may make it harder for them to relate to you or spend time with you. Help them out by letting them know about your positive and negative feelings and what they can do to help you.
From the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care. Chapter reprinted with permission from the NRC TBI publication, Recovering Relationships After Brain Injury: The Essential Guide for Survivors and Family Members.
Comments (261)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
June replied on Permalink
My son had a severe brain injury with DAI 2 years ago. We did everything to help him recover and now he seems to blame me for things that never happened, made up things. I cannot reason with him and he has cut us out of his life. It is so heartbreaking and I worry so much about him, praying that he is ok and happy. I am just at a loss about what to do. I do not want to push too much and add stress to him but I miss him dearly. He refuses to see his doctors and doesn't believe he has any executive function issues. He is currently employed and living with a girlfriend.
Liz replied on Permalink
My boyfriend had a car accident since February 8th 2023 and was taken to the hospital that same night turns out he’s been in a coma had injuries in his head and surgeries including spleen and rods on his right leg ( I couldn’t go and see him because of family issues and plane tickets are expensive) but was talking to him on a daily thanks to his parents until March 20th he woke up but instead of going to rehab he wanted to go home so when he got home he was like fine until days become whenever I talk to him he was just angry at me telling me that I don’t understand what he’s going through and that he rather suffer pain and pass away well each day is a challenging
Sometimes I get upset when he’s angry and I can’t control myself because I suffered emotional distress and depression but he just gets stress and angry falls asleep and wakes up like nothing happened how can I help. Him understand what he’s going through
Kait replied on Permalink
My best friend of 20 years fell and had a serious TBI 2 years ago that has affected her higher cognitive functions such as her self awareness, abstract thought and pre-planning. As she is single, with no children, and is estranged from her siblings (no hope of reconciling on her part), I have been handling all her finances, getting her to appointments, following up with her doctors, etc. Since comes across as normal until you start talking to her in depth, no one realizes that she needs a conservator. My friends drivers license has been suspended, until she gets cleared medically, but she has been driving anyway, which forced me to take her car keys away. I will not enable her to injure herself or other innocent drivers out there. Now she threatens to sue me to get her keys back, accuses me of stealing her money, and has cut off my friendship. I know it is the TBI, but it still hurts.
V replied on Permalink
I was with a guy for 4 years with a tbi. I loved him tried to stay with the relationship there was many hurdles from his behavior from hearing voices. To being aggressive an thinking I'm cheating when I'm not. Then he started using drugs an his behavior started to de·te·ri·o·rate an was becoming aggressive it was to hard. I'm single mother an I had to let him go. I still love him but it's difficult to have a relationship with someone like this.
Brooks replied on Permalink
I feel as if my wife is in the same position you were in. She’s terrified that something might happen again (there’s been a quiet a few verbal abuse incidents in the last 5 years of marriage) and she is afraid to let me in to her heart again. I promise her every single time that I would get help, and I finally am. I am almost positive I have a tbi from time in service. What advice could you give me to save things before they really are too late like she says they are..
Gwendy55 replied on Permalink
Five years ago, I had a colloid cyst removed, since then my patner of 46 years has treated me bad by disregarding everything I say, when I try to explain he runs off to bed. I feel that he has ridiculed me in front of 'new' friends, he says I'm always angry, not true. He says people like me, how does he know? he loves to tell them if I've made a mistake or done something he deems funny. He says I'm feeling sorry for myself, but I feel sorry for him, he's the one with the problem. At my wits end, i think its over now. wish me luck.
Lee replied on Permalink
I had a brain hemage ended up getting 2 shunts in my brain to drain fluid while I was in hospital for 6 weeks I set up a new snap chat and loads a girls were adding me I accepted them and they were sending dirty videos and my girlfriend got my phone and seeing all the messages and videos I was been sent and has been heartbroken over it I don’t remember doing it or anything as my memory has gone down hill and she has not for gave me
Anonymous replied on Permalink
I was in a car accident November of 2017.
I suffered a few injuries and a brain injury was one of them. I never knew anything about brain injuries. I felt alone in everything as many have or do. I had a caring boyfriend who was by my side through the first year. Very supportive and compassionate and even tried to listen to how I feel. Over the past couple of years things have changed. He became less and less understanding and like others whom have commented, he stopped being intimate with me as well. It made me feel that much worse about myself. During my recovery down time from that accident he picked up the slack and became the financial provider. That had caused a wedge in our relationship even more. Over the past few years where I haven't been able to work, he has made me feel like I do nothing and he does everything and that I do nothing to help him with the bills. That I don't take pressure off of him. " he quoted to me" I'm taking advantage of him paying for the bills because iam not paying any of them. Before my car accident I was a single mother and working full time and getting by paying all my bills by myself even though, he was my boyfriend of three years. I was independent!!! I know I'm not the same since my TBI and accident because I'm more emotionally scattered. I feel no one understands me that is in my life. I get confused easily, I have forgetfulness and even feel drained and everyone in my life dismisses how I feel on the daily, acts as if I'm perfectly fine or the same now. I feel more agitated and stressed easily over things that feel too much for my brain to handle to be able to function. People get easily annoyed with me when I speak and take everything, I say wrong and than criticize me over what I said and to no fault of my own, I say what makes sense to me but doesn't make sense to those around me that aren't going through what I'm going through. Than I get told I understand you have a TBI but they don't because they don't have one. Again, acting as if what is wrong with me is nothing. I wanted to share my story, I think there's many of us out there suffering in silence. I don't have a supportive system in my life. I feel I have to be quite in order to keep those around me from getting upset at me. Definitely feel the same as others do whom suffered living with the aftermath of having a TBI.
Gwendy55 replied on Permalink
Oh my goodness, I'm so glad that I read your post, I feel exactly the same but my problem is I had a brain tumor, my partner has turned 'nasty'. always running off to bed if I disagree with anything he says. he watches me all the time, cuts me off from joing any conversations with 'friends'. loves telling everyone that I've had brain surgery. its never ending. I feel totally different than I was before the surgery, I dont seem to be making much of a recovery, I hate it. but life has to go on I suppose.
Tbi63 replied on Permalink
I’m so sad ;( felt like I was reading exactly how I feel . And now losing the love of my life over it . Completely heartbroken and feel so alone now . He was one of the only people there for me . He knew me before my injuries in 2016 . I feel like I have no friends anymore
And someone who used to be close to me today said “ no one likes you” maybe it’s true .. I feel like I’m a completely different person and I just wish this never happened to me ;( I’m having an extremely difficult time emotionally since my TBI and physical injuries . I can’t accept this new reality ;( and the one person I need is not by my side
Anonymous replied on Permalink
I am an active duty soldier and while I was deployed my wife had a TIA and when I returned it was not the same. She doesn't like men and thinks she is a lesbian and I want to know if this has happened to anyone else?
Anonymous replied on Permalink
My husband of 74 experienced a TBI and multiple fractures nearly a year ago when a van pulled out in front of him when he was on his bicycle. He was really fit but now struggles with fatigue and breathelessness. Worst of all he misinterprets everything I say as a personal attack or criticism and gets angry. I really find this hard as the current lockdown restrictions have left me with no means to recharge and am feeling depressed which is not helped by how he is with me. I feel as if I am constantly walking on egg shells and cannot be myself. I cannot see this getting better either.
I have considered leaving bit think he needs some support but not from me it seems
He use to make me laugh but no more aa he has changed. Does anyone one else feel this way ?
Anne replied on Permalink
I totally understand your predicament. My adult son (who doesn't live with me, lives on his own) is exactly the same. I am "allowed" to visit once a week. Inevitably, during the visit, I say something he doesn't like. It's as if a switch is thrown. He rants about things I am supposed to be "drama queen, selfish," etc. , he hates me, has always hated me, no one likes me - nothing too bad to say about me. He will not have outside hekp, as no friends (doesn't want any). I seem to be crying most days lately.
Tracie replied on Permalink
I hope your life gets better .
Tracie replied on Permalink
My husband suffered a TBI it has been almost a year and literally he gets mad and twists every thing I say . He tells people horrible things about me , we were each others best love story of all time now he hates me and is once again mad at me for his bad behavior and leave yet again..I thought I was the only one going through this .
T replied on Permalink
I feel like this, the same as your husband. I no longer have a sense of humor, I feel irritated most days, lonely can’t relate to anyone. I too have breathlessness and fatigue. I’m not sure if things will get better, it’s been 3 years now...but I keep working on myself and hoping that I will be ok soon.
I also have a tendency to just stop talking abruptly if I feel that my words are not being heard. I now just get up and walk away mid sentence. It’s quite bizarre at times because I’d never do that prior to my surgery. My ex husband tells me that I am different I’m not the same. It’s interesting to hear, yet I feel numb to anything people say to me. I am always isolating myself and am always too tired to drive. Going back to work is a huge challenge too. But mostly I have noticed that I love quietness, calmness, humility and patience.
Best wishes for you and your husband!
The TMI husband... replied on Permalink
You are allowed to leave.
No one expects you to stay.
It is just as horrible for her.
Anonymous replied on Permalink
Yes, definitely. My husband calling me names, telling me I'm worse wife ever. After TBI my husband became a stranger, mostly to me.
Deborah replied on Permalink
My son feels he is being personally persecuted every time we speak. it makes me almost cry all the time but I realize it's part of what a traumatic brain injury will do to a person. You're not alone it's very hard. I don't know when it gets better all I know is somewhere in there is the little boy I gave birth to and I will never give up on him.. party of loving a traumatic brain injury patient is understanding that some things they say they really don't mean. if they were back to the person they were before their injury they would never say those things to you please remember you're not alone and I know your pain. I live with it every day. Bless you and have strength you're not alone
Marshall replied on Permalink
I was hit on my bike and then in my car. This happened in 2013-2015. I have recently realized that I am not able to communicate. Your story touches my hart as this is how my life is seance the first TBI. The question is how to communicate. I now ask what are we talking about so I am sure we are talking about the same thing.
Anonymous replied on Permalink
My husband of 35 yrs had a stroke five years ago. No physical symptoms except a massive headache and high blood pressure. He ended up with aphasia. Luckily with extensive therapy and from myself he has returned to his usual self and returned to work for his final recovery. However, he doesn't work anymore (up and quit, not like him). He's easily frustrated and loses his temper fast. At times I am the target with the criticism. He has lost friends both his fault and theirs. I was the pacifier and realised there is nothing I can do. He was so easy going and now has no empathy. I have physical disabilities as well and do my best to manage. He shows no enthusiasm and I have to push him for his walks for both of us. This caretaking has taken his toll. He ended up back in hospital high blood pressure because ne was not looking after himself as well as he should. I find I am angry at him and it doesn't do any good to say anything as he will fly off the handle and he brings up past mistakes I made 20 years ago. When I go out he sends me texts not so nice..as to when when I am returning. It is unfortunate we live in a town where everyone seems to know everyone's business. He has been portrayed as someone who's stroke made him less. One in particular and I call him "know it all, better then you" who makes comnents to others about him to others. Hubby and I dropped him as we caught him in his lies. At the same I was dealing with the so called friends who gossip and I dropped them too. His short term memory has been affected and long term hasn't. So I do my best to keep busy and not be so angry at those who let us down when they try and be so nice to us. Am I disappointed yes, do we have the social network we once had, no. Just wish he would go out and talk to someone else instead of me as he has isolated himself. A couple of real good friends have reached out to him and he says no, prefers to stay home and watch TV. So that's where it is. Keep going the best we know how.
Anonymous replied on Permalink
I feel your pain and disappointment My husband suffered a TBI He was well liked,outgoing , always busy doing something with others After his injury people gossiped Especially those we trusted close to him. Rumours flied and still continue. People avoid calling even to ask how things are. These are people that my husband has always supported and helped when their relationships struggled, their kids were on the wrong track . It is hard. Every day is a struggle. Especially when kids are involved. It has been since 2014. It seems to be a topic that people like to have opinions on without ever having lived it. Office gossip in a small community that leads to big gossip to the rest of the community. Our relationship was very strained prior already as he would always be the fun of the party and always available for these people while I was at home with our kids. He did not listen as I Would beg him to stop and prioritize us. Long story short. All those people left him. They pretend they don’t see him .. We work on our family in between the constant arguing that is part of our daily lives.I feel like I want to leave him but feel responsible as I see others that will just take advantage of him…. Then I think of our kids and don’t know anymore ..
Debbie replied on Permalink
Your struggle brings me to tears because It is so very much like my own. I am 56 and John is 58. He had his 2nd stroke in January 2021. He is so angry all the time. He use to be very compassionate and tolerant. I don’t even recognize him. He wants me to leave and he blames all his misery on me. I am not perfect. I could write a page about my flaws. He seems to forget his. I have been married for a few years and together for 10. I do not want to start over and financially it seems impossible. I am listening to every YouTube I can, learning to be a mindful and considerate person which much of the time I am failing miserably. There was no compassion, tolerance or empathy in the house I grew up in. my dad was a drill sergeant and i just realized mom is a narcissist, I just always thought she was a big ole “B”. I call this *post-stroke#2 * man in my life “Husband” and I keep telling him to bring John back because I don’t like him at all. I feel so alone in all this. Right now I am playing the “waiting game”. I never thought this marriage would end like this. I live in Georgia. My heart is broken for you. Being married soooo many years for your husband to change so drastically. I wish the doctors would have given me divorce papers at the same time they gave him the stroke survival meds. I saved him both times just to live like this. I wish you tremendous amounts of strength and courage. BIG HUGS. Plz contact me. Debbie c
Tracie replied on Permalink
I have tried to look up anything that would describe what I am going through with him and this is the first time that I have found honest answers ..
My husband is my superman,fantasy man ,and hero ....then TBI ....
HE HATES ME AND EVERYTHING I SAY IS TWISTED AND THROWN BACK AT ME !!! .I was once the best wife in the world and his best friend ...now he is constantly leaving me and calling me horrible names ..I am in new mexico half across the usa away from family and getting abandon her .
Anonymous replied on Permalink
My partner who has a head injury no longer touches me or want me. All I feel like is a caregiver. The it’s need a year, since sex and since he even put his arms around me.
I even mentioned to him if he would hold me and played with my toys with me. No he would have once watched and joined in.
I love him to bits but there is not even the personal touch like when at the bench he use to rap his arms around me no long mer does.
I do ask for these things believe me I tell him how I feel but know more I’m thinking of Twitter or something for a one night sand to have someone touch me. Even if I feel bad for doing it he won’t give what I need when I do. He does not remember me massaging him last week.
David Maynes replied on Permalink
I need someone loving like you !! Im with you!!! I know how itfeels
Debbie C replied on Permalink
I don’t know how old you are but refusing affection of any kind is emotional abuse. Because it leaves you feeling less than. Love has no value when there is no respect. I am facing divorce because because after his 2nd stroke, my husband has decided all of his problems and misery is beacause of me. Life is very short. Very short! Love yourself and be selfish. Love yourself enough to make the hard decisions, before you wake up look in the mirror feeling like less deserving and unworthy. You are worthy of respect, admiration and physical comfort. GO BE & DO YOU. It is extremely hard to walk away from familiar, but a year down the road you can be loving life with new friends. Best of luck. Debbie c
Cindy O'Hara replied on Permalink
Hi , I am so sorry that you are not getting that special touch (connection) that you so much need . I truly understand because , even though it is myself that had a major head on car accident and i had a brain trauma and many injuries , i am able and wanting the same from my husband that i have been with for over 24 years. I love him with all my heart and i know he loves me but its been 10 years this January 31st that i had my accident and our intimate relationship has slowly stopped and for the last 4 years we have had sexual contact just once and that was in the shower . I have many times mentioned it to him or i have said that i need sex and he just seems to brush it off . I have even thought about just starting to initiate it but seriously it's been so long i kinda feel awkward to do that . He always cuddles me at bedtime and if i kiss him he will kiss me but i feel like we are just roomates that cuddle at night .Don't get me wrong , i would never want to loose my husband but i have also thought about just having a one night stand because i truly need to have that intimate feeling of being touched . I don't understand why he doesn't make love to me because i have no doubt he loves me and i have tried my best to go this long without being touched , but I'm at my breaking point .
David Maynes replied on Permalink
Im here and im with you i myself need this wanted feeling.
Anonymous replied on Permalink
I had brain surgery to remove a colloid cyst. The first few months of recovery were straight forward, lots of sleep due to fatigue. Memory issues abundant. About 5 months in, energy came back and memory improved a bit but then there was an emotional recovery that began and has been the most difficult to deal with. I began to feel apathetic about everything, and I began to think about my ex-fiance that I broke up with 2 years prior to my surgery and she has been dominating my thoughts from 5 months on. Interestingly during that 2 year period post break up I was not missing her that much, but post surgery it seemed to have revealed all these subconscious thoughts and feelings, plus with dodgy memory, it has been extremely challenging. I went into deep depression and also wanted everything to end.
Like many others have mentioned, I too get more easily agitated, I have little patience for my friends who say or do things that I do not like even if there was no intention to offend me.
I am quite annoyed that the doctors do not at the least warn TBI patients of the high chance of feeling depressed, dejected, confused about life and changed social attitudes, and to offer resources. Of course, having this done in 2020 was the worst as the pandemic further isolated me and caused stress. I have since seeked many psychologist to help with my recovery and suggest people going through the same depressive episodes post TBI to do the same.
Debbie C replied on Permalink
Do not believe your thoughts. They are not real. I recommend you check out a TedTalk on YouTube “How to get overSh*t and be happy”brad Blanton and “ Learning to respond Not React” Tara Brach I have learned so much about how our thoughts Sabotage us. She talks about depression. I have been going through a trial in my life and YouTube has a lot of info. We don’t have to buy into ever thing. But is you take away one piece of info that improves your well-being, it is worth your time. Good luck and know you are not alone. God Bless, BIG HUGS, Debbie C
Anonymous replied on Permalink
I had a brain tumor when I was 8 years old and after having it removed I found I gained a ton of weight. I became very self conscious and isolated. Fast forward 20 years and I'm married with 2 kids but still feel super self conscious and find it really difficult to make friends. I have no friends atm and its really heartbreaking. I will become friends with someone but then after a short while it seems like they avoid me. I'm a quiet person, especially in groups. I think I'm mostly really reserved because I feel like the way I express myself is wrong. People look at me strange after my response or make fun of me. I would just really like to be able to make good quality friendships.
Debbie C replied on Permalink
Friend, you are not alone. Constantly what come out of my mouth seemed great in my head and the word some out wrong and backpedaling is useless. Try not to look at your weight as a negative. Look at your body as a whole internally and externally and as you do this and eat healthy and find an activity that is fun and gets your heart rate up and make decisions to do and not excuses why it can’t happen, you will be on your way to a healthier you. Did you know sugar kills the collagen in your skin and causes your skin to age faster. I no longer dwell over what comes out of my mouth. F’ em, I purchased and oculus quest 2 for myself which has an app called Supernatural that will make you sweat balls.
You are going to be ok. It is hard to make friends the older we get. Know you are worthy of all good things! Check out some YouTube about faking confidence til you make it and always speak your truth.
Before you change your food choices or start becoming more active, talk to your doctor or use common sense. A good rule of thumb is food we fuel our bodies with should come from the ground or from an amimal not a box or a package. You got this and you are going to bloom right out of your Garden. You man meet friend on meet up and being active in your community and drag the children along even if they don’t want to. Your life is what you make it and I know you are going to make it awesome! No excuses! Conquer and Destroy the negative. Big hugs
Miracle replied on Permalink
I'm not actually looking for a medical response, as I have recently reliased that only so much can be done for those who have suffered severe head trauma. I'm learning to just learn to adjust to the new me, and to hell with being lonely . . . i've always been an alone kinda woman. But having said that I was also a socialite, so couldn't get away with being alone, or enjoying alone time.
My accident happened on the 6th of April, 2014. I was then 44. My best friend had just lost her mum and I was over at their house when my accident happened.
As usual, in Ghanaian culture, people come by to greet.
As a couple were leaving and waiting to drive drive out, I realised I realised the security man was not available, so smart me, I decided to open the gate myself.
This is or was a huge sliding metal gate! I must have used all my strength and pulled the gate with such force so that it would just roll on the rollers . . . that worked out alright, but when the gate got to the end of the roll, it unhinged itself and landed on my head. . . i don't really remember much after that!
My brain was bashed from the right to the extreme left of my head, and burst my right ear drum. I was delirious for a few weeks, but in my head my thinking seemed normal. I earned the nickname "Miracle", as people didn't understand how i was up and going on with life within a couple of weeks.
I'm now 50 . . . some days are good and others not so great.
On some days I cannot form sentences, or remember peoples names, or even recognise them...yes, everyone tells you to write things down, but half of the time it doesn't register.
Oddly enough, i'm the person within my family and social surroundings who generally remembers everrything simply because i remember things in picture form, and I am NEVER wrong! Now because my old memories are intact, most people assume i'm normal! It is new faces, new memories where short term memory has kicked in. Anything after my accident in 2014 doesnt register. By the time i get up tomorrow i will not remember anything i've done today; right down from what i wore, to what i ate, etc
Of late i'm scared to sit a car, or go to far out. . . luckily i work about 5 minutes from home. My hearing is bad, and deafens both ears when i get anxious. I don't take friends telephone calls as it takes my mind a while to contain what they are telling me. I don't go to meetings for the same reasons. I have literally reduced my whole life to work and home . . . no friends, no going out as it makes me anxious. Work and home, because then what i have to deal with is limited and not distracted by what i find unecessay . . . as for friends, i think if they really are my friends they should know i'm struggling, besides which, like i said in the beginning, i'm used to being alone. As for a romantic relationship . . .i doubt that's going to happen again in this life time! One of the other conditions i got was severe OCD . . i don't like people touching me, shaking my hands, filth, etc. . . .so some guy wanting to be in close contact will kinda be difficult, and now i'm 50, and menopausal, (hahahaha) let's call that a bonus.
One thing i say for this Covid pandemic, is it has tamed my aniexty attacks as at this point no one can insist on visiting, or vice versa, or having to be social in any manner.
All i can say is learn or find ways to happy yourself, as the doctors can only help us so far . . . it's like dropping your phone, even if it does continue working, it's never quite the same again. Stay safe and stay blessed!
Deborah replied on Permalink
God bless you I hope someday you find somewhere in between not understanding and having a normal life again. I'm not going to say it's easy I used to work in neurology but I have a lot more respect for people with traumatic brain injuries God obviously wanted you here for some reason or you wouldn't have lived when that gate hit your head. even if nobody's told you this and maybe you don't even believe it you're a miraculous woman and God loves you and so do I.
Debbie C replied on Permalink
You have given me an email awe inspired heart at your bravery. I am also in my 50’s and I have a great amount of difficulty staying on task. Is medical marijuana in your state, if so you may want to discuss its benefits with your doctor. There are also some radical studies on LYSERGIC ACID DIETHYLAMIDE RECONNECTING synapses in the brain. Do not do anything without contacting your doctor or research facility. You might even meet a handsome an that you want to touch you. You deserve to have the life you desire. I wish you all the best and keep writing your daily activities. You may have a book in there to publish. Add a few juicy bits from time to time or an off handed joke because Laughter is the best medicine. Lots of love friend and BIG HUG (rather you like it or no) LOL HEHE
Anonymous replied on Permalink
I had 14 surgeries, most of them brain, in just over 16 months. I leaked spinal fluid from my left eyes, both ears and my nose. I finally feel like I am getting my feet back under me, Finally after studying for over a year have been able to move formulas and normal values I need to know to sit for my RRT exam,(a 2 day test to become a Registered Respiratory Therapist) from my short term memory, which sucks rotten eggs to my long term memory, I have been back at work full time for going on two years, minus one brain surgery to replace the proximal catheter in my LVP Shunt. Which of course occurred right at the beginning of the Corona virus. When my sutures cam out and I was ready to get back to life. my boyfriend let me know I would have to stay in a hotel, so as not to bring the Covid Crud home to his parents, which I completely understood. 4 hotels, 3 long months later.............my mind is going to crap. the feelings of quarantine and isolation, with our major form of communication being in texts, I found myself living alone in an apartment, 45" from all my friends, and then found out my boyfriend was not coming with, then he broke up via text, He does not want to have to worry about me anymore? That hurts more than the multiple incisions, Lumbar Drains, failed shunts, headaches that bring you to your knees,
I have always been able to deal with lifes bumps pretty well, but not so much anymore, my brain confuses me, written words are harder to digest, and my short term memory loss demands I read the meassages like 5 times before I can even form a response.
I feel broken, bent tattered and torn.
I feel lost, isolated and completely alone, I can't seem to stop crying and feeling so much helplessness. my Family lives on the other side of the country, I am broke, I am feeling so completely alone and it scare the **** out of me. It also makes my head hurt......
I think I just need to know that I am not alone., in a world where I feel completely alone.
Debbie C replied on Permalink
BIG HUG. in our deepest brokenness, hurt and loss, Jesus is redefining who we are to be. Sorry about your self absorbed jerk boyfriend. Are there any support groups in your area. Check meet up app. There may be others in your area in a similar situation. Stay strong! You are worthy of all good things. Don’t give up and don’t stop moving. all my love to you friend
aw replied on Permalink
You are not alone. My cousin is in the same boat...well almost. She has a shunt to her brain and cries when she thinks of her best friend she lost in the accident. Said she cannot control her thoughts. She can be playful but other times she gets depressed. Since she can't drive or do much walking things are even more difficult. She worries about her brain and spinal injuries that could shorten her life any day now, which is sad.
Kim Carrier replied on Permalink
I am soooooo feeling that way. I am not sure what to do. I am going to be alone. ... I wasn't like this before, but can't get my hands around it.
Lori DeHass replied on Permalink
Kim, I feel for you, and know exactly how you feel. If you are able to get your hands around it, please share with me how you accomplished this....with much love for your brain,
lori
Frontal lobe gal replied on Permalink
I was looking for a site for people with TBI's post 10 years. I still have plenty of issues, but not as grand. But the relationship one is a difficult one for me. I know I am somewhat the same but something has changed. The frontal lobe was through alot, but the dr. says my core personality is still there but I will be challenged by my own level of change. Huh. I was told my tolerance level is not there. True. So no one really can handle me when I speak the truth on how i can't handle the situation.So they give up on me thinking I should be able to handle it. Oh well. It is lonely for sure.
Jonathan replied on Permalink
I am currently struggling to maintain ties with my cousin as he keeps expressing the “truth” as he sees it and treats people like dirt and then forgets about it the next day as nothing happened but people do remember so basically avoid socialising with him. He has one by one lost the few friends he had and basically only has me now. I am struggling to deal with the mood swings in the text messages and conversations and he has a substance abuse problem he is battling with.
Julie replied on Permalink
I find relationships really, very hard. I had a car accident in Oct 2018. Right away I began to feel the difference. I lost a boyfriend and relationships with my 2 sisters. I speak my mind because I get agitated and impatient. It is not something I can help. I used to teach and love kids and thought I would teach until I was 90 yrs old but now I shop and deliver groceries. for customers. I realize now my personality was a blessing and a gift. I was happy and loved life to the fullest. Also, I used to love to write but now I have a hard enough time holding my thoughts together and communicating with others.
I miss the old me and so do my kids. My 11-year-old says he wishes I was like I used to be. It is really very hard to accept my limitations. I have tried very hard to change things and hope my life will get easier. I am praying and trusting God He can turn this challenge into something good because I feel alone too, and. Just want to make my life better.
Anonymous replied on Permalink
My husband of 19 years had cardiac arrest in May 2019. He had to be revived twice and then fell into a coma for 27 days. When he woke we were all hopeful and he was beginning to make strides physically and neurologically. However, the hospital in Boston transferred him to a horrible LTAC 1 facility and they did NOTHING for him. No real PT or OT and toward the end my son and I walked in on him and thought that he had died or was about to die. Turns out that he was so weak from dehydration and malnourishment. So, working with a local cardiologist and neurologist, my son and I did an AMA on him and brought him back to NH and the hospital where it all began in May. But, during this horrendous time at the rehab, I also found out that he had been actively cheating on me with many women over the course of 16 years ! Then, we discovered that he had also mismanaged our finances and basically had no thoughts as to our future. I am disabled myself and he insisted on doing the bills years ago and I trusted him, I had no reason not to. HA. I did not see any signs and trust me, he knew what I would do to him if I did catch him cheating, especially since my first husband had violently abused me for 11 years and also cheated on me, So, my ability to pick men is horrible and now I am unable to confront my husband about the cheating, mismanagement of money, and the fact that one of these women supposedly was going to confront me about his cheating and their long term affair! It is very hard to sit and watch someone you had loved for such a long time, had twins with and planned a future with and see them struggle to feed themselves or watch as the nurses check to see if they have soiled their diaper. He does remember cheating and I do not bring up the subject, he does. I try to visit and spend some time with him but I am so hurt and my life has been turned upside down. I am working with our priest for help and have been able to flip the switch, if you will and I am able to now treat him as the patient and make sure that he is not hurt, gets proper treatment and is treated with dignity and respect; as any human would want. However, as for my marriage, well, that ship has sailed and it only sailed because of the enormity of his infidelities. I was granted guardianship before I found out that he cheated and I entered into this guardianship promising that I would do everything in my power to make sure that he does not get hurt and that he receives the necessary course of action for his recovery. I fought very hard before having to do the AMA but I do not regret my actions. However, I do wish that I had been able to move him much sooner. I do not know what our futures will hold or if we will remain married. I do not know what to do if I wanted out of the marriage. But, I will remain his guardian simply because I cannot and will not walk away from him or his needs. This has been hard for us all and we have had so much on our plates. I wanted to run away so many times but I had to remain vertical for my children and for myself...and for my husband who is still really sick. He needs heart surgery but his mental state is preventing that from happening. I am told that he may end up in a nursing home and this is so sad when you consider that he is not yet 50 years old and had a very loving wife and two fabulous children who loved and depended on him. I just needed to vent!!!!! Thank You
Anonymous replied on Permalink
It is so sad with my son who got TBI from football i college and, later, in the Pros. He hold down a good job. However, I only know this from media since he abandoned me (his father) about 14 years ago. My brother put him on the phone about 10 years ago but his responses were perfunctory and alien. I have tried to reach out via email and other ways but to no avail. The only comfort to me is that he lets me send my grand daughters a Christmas gift. However, I seemingly can not have any other contact with them. On top of this, my older son, has abandoned me (about 3 years ago), I've tried to contact him but he wants nothing to do with me and I cannot have contact with his son, my grandson. I love them all but it is a hard road>
ralph g replied on Permalink
It's a good thing there are platforms like this one that makes me see that I am not alone in this battle and there are other people that I can get learning from their own experiences.
My girlfriend/fiancé was diagnosed with a rare form of brain cancer last May 2018. The location of the tumor is in her hypothalamus which made it very hard to operate or else it will only cause a lot of complications and also, the hypothalamus being affected caused a haywire in all her hormones that regulate her salt, sugar, steroids, estrogen, progesterone, regulation of water, temperature balance, etc. She had a year of chemotherapy but afterwards the tumor only got bigger. She had brain radiation treatment as well to which she responded very well and the tumor went back to it's original size. However, she had a stroke recently caused by clots forming in her brain brought by complications of high dose steroid replacement and a heart complication from her disease/medications/treatments.
It's been a tough time for us. I always hate it whenever I see her suffer. We were only like 3 months together when she was diagnosed with it and I just met her here abroad. It's like the world turned upside down for me. I have been with her all throughout her journey --- all the hospital admissions, doctor appointments, scans, treatments, everything. She's always admitted in the hospital every month since she started the chemotherapy which always compromised her immunity and causing infections here and there. Her longest stay in the hospital now is for the last 5 months and the stroke made everything even more complicated that's why the doctors are not planning on letting her go because she's always confused and all her capability to do daily activities are affected.
I saw all the sufferings and difficulties and challenges she had. She was not able to work anymore for more than a year and a half now and I have to sacrifice a lot. I basically became her own carer.
It was exhausting and depressing. I lost all hope and am still losing hope every now and then. There was a moment last year I got so low I thought of ending everything already. I though everything was unfair because I could see everybody happy while us, we're always stuck in the four corners of different hospitals.
Nonetheless whenever I look at her, even though her physical appearance is very different from the person I met before, still, I see the woman I love so dearly. I always see a spark of hope and joy in her. God, even though she's been suffering, you could always see her smile. We're total opposites even back then. She's always bubbly and friendly and joyful and happy while I am always silent and well-reserved. That is why even when thing gets tough all the time and even tougher over time, I can't leave her. It always crosses my mind, the thought of leaving her. But I always come back to my senses. She made me a better man than I was. Even though she's always confused and acting childish, I could always see her there. I never got tired of reminding her of all the things that we shared and all the things that she love.
I do not know what the future has in store for us. But we will keep fighting and surviving and living. It's when things gets tough that we will see that hope is the last thing that will go, but until then we all keep holding on.
Anonymous replied on Permalink
You are a great person! Thank you for sharing your story I teared up reading it. Thank you for what you are doing .
JS replied on Permalink
All sounds very true as I have been very confused overall with friendships, relationships and family connections after TBI occurred to me riding my bike home from work and being struck badly by challenging motorists!
Anonymous replied on Permalink
My partner had a sports related concussion almost 8 years ago and still suffers significant symptoms of daily headaches, fatigue, difficulty sleeping. She struggles to work and maintain a "normal" life but has told no one else other than me what she goes through. Recently she said she feels as though she needs to be alone and that being in a relationship is too exhausting and difficult for her and that I deserve to be with someone who can be in a relationship full time and give 100%. I have tried to explain to her that I love her and want us to be together but she is now thinking differently and that it was "unrealistic" for her to think she could be in a relationship and that what she wants and what she can handle don't align. I wonder if anyone else has experienced this and whether anyone has any advice. I suggested therapy but she has been resistant. Thank you for listening.
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