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.
The news that people stay married is not encouraging for the caregiver. I love my husband but he is a shell of himself. I am still working full time, doing all of the house work, we have lost all of our friends. I love him but I do not like him. I resent him. And Everytime I consider divorce, for my own mental health, I am guilted by family members, or by friends, or...told by lawyers I would have to give this man half of my salary for the rest of my life. We have been married 7 years. Five and a half if those years he has had this brain injury.
I considered suicide, many times. I honestly don't know why I am still alive. I don't want to be. I hate my marriage. I hate my life. I love him but I don't want to live the rest of my life like this.
So yes, to the injured , this is hopeful. For caregivers it is proof, yet again, that we don't matter. That we deserve to be gaslighted by our brain injured spouse. We deserve to have to do all of the house work, make all of the money, pay all of the bills, be alone. Completely alone.
So go ahead and claim this is encouraging but maybe also work on finding out how to support caregivers. We are people too.
This is exactly my situation. My husband has SBI . I feel exactly like you. Its not his injury its actually ours because I feel my life has been more affected than his. Yet made to feel guilty about wanting to leave. Im exhausted from arguing everyday and being gaslighted by him. Stay strong. Im doing my best to. Love and light to all the carers and spouses doing the hard work with no recognition.
I agree with you 100%. I am alone whether I am home or out with friends. It's a catch-22, a no win whether you stay or leave. I did divorce my husband and left physically, but not emotionally or mentally. It's stressful whether you stay or leave. We as caregivers are not appreciate. We are overworked, misunderstood,ALONE and live with false hope if any hope at all. TBI is permanent and leads to more and more health problems and questionable behavior. It's an inevitable downhill slide. I am not a pessimist but a realist. I am a caregiver to my ex-husband now (why?} (guilt) not knowing how long this will continue. I've learned to be alone, not expect anything from him, and lost the desire to pursue a future with another. In order to keep peace I've lost myself. Thank God for my church where I find some joy. Signed, Lost, Lonely, and Tired
I am so sorry to hear about the things you have experienced. I had a stroke going on 3 years ago now. After a 34 year marriage and 3 weeks of the hospital, my wife announced she was going to divorce me to our 21-year-old son. After all, things looked pretty bad. I couldn't sit upright in bed by myself without falling over, the left side of my face was sagging badly, my left arm and leg didn't work so I couldn't walk. I had minor cognitive issues and couldn't read for some time. Fast forward to now, I am divorced, walk with a limp, type one-handed, and made a lifetime of money in the market since COVID19. I am dating a fantastic woman that lost her husband to ALS after 7 years of caring for him. In that time as a caregiver, she had to find outside comfort from another to continue to care for her much loved husband. The story is to say there are many twists and turns in a person's life, where unexpected things occur and develop that my offer happiness as long as life continues. Pray for God's grace and search for an acceptable change. You just don't know! God bless and I wish all of you well
Brian can you please help me with some advice? My husband had a stroke 5 years ago today. That was 2 months before our wedding day. Right after our marriage he changed. He was physically ok. I never had to take care of him, but mentally and emotionally he is damaged goods. He isolates himself, stopped communicating, he's always in pain in his back and legs. I thought it was sciatic nerve damage, but after research I just found out an hour ago about this drastic personality change. He just told me today that he's no longer in love with me, he's unhappy, and he wants out. Well there's one problem. I have nowhere to go. I have been a great wife to him and was a great girlfriend for 10 years before marrying him. We were so in love before the stroke. Please help me because I am lost!!
Hi a last I've found someone who can relate to what I'm going through. My partner suffered a cardiac arrest at aged 34... We were also 7months pregnant with our first baby.... Both very happy and engaged.... This happened and myself n his best friend were with him... His best friend did cpr ASAP and saved his life. It was so awful for me to see him like this and then told he prob won't make it and if he does he will be brain damaged. Long story short he suffered, we had our son 2 months after. When our son was 2 I found out we were having another child. I then descovered he had had an affair with a friend... We split up and I was devasted. We had a year apart and I decided we had to much to lose, so we got back together... It was hard but great at first... But then he changed, was snappy and just not his usual loving happy self.... After a year, he said he wasn't happy and left!!! I'm so lost right now and can't understand why he would do this to me and his own kids.... He's moved in with someone new after 6 months of knowing her and lives with her teenage girls... Hardly sees our 5 and 7 year old. I'm just left shocked, hurt and very lonely and sad. He was my soul mate before the cardiac arrest and now I feel he's a stranger..
I am so very sorry to read about your situation. I can only share my personal experience as the one that had the stroke. Specifically, my marriage was in a difficult place when the stroke occurred. It could best be described as in a benign neglect phase for both of us with neither particularly happy. So when an opportunity arose to exit, she did. Texas is a community property state so all money/assets were split 50/50 including costs for the attorneys. With help I moved to an apartment I could afford from cash reserves. During the following year while going through the divorce process I concentrated on how I might make a living with my cognitive limitations and was able to find some success in an area I always had interest in which in my case was investing in the financial markets. At the very end of the first full year of being in the apartment I felt a strong need for championship and met the lady I'm still with, two years after our first meeting. Although I felt very hurt and wronged by my ex, for the timing and the way things progressed, it has been surprisingly ok overall. Now for reasons I still don't understand, the weeks after the stroke I was very angry with her or anything she would say or do around me or any help she would offer me. We experienced never ending arguments, it was best for both that I moved out. I'm unsure what I've shared has any value for you? I can only say if you love the man, find a way to give him space to experience what separation will mean for him and you. If the relationship is not yet broken from your perspective, remain caring and helpful where you can, however earnestly prepare for a new life direction. God bless and good luck with this journey.
If his disability is significantly less than the household income was, that is probably why. I am not sure what state you are in, and this is not legal advice, but Ive experienced and been told that in CA, the premise is that if you are the breadwinner, you have to keep the ex in the lifestyle they were accustomed. I had to pay 1/2 of my take home pay to my ex who wasn't even disabled! He refused to get a job, so after 8 years, I gave him 90 days to get a job or I was filing for divorce, at least on paper. He got a 2nd girlfriend (yes, had already been cheating on me and got a 2nd) and a divorce attorney. And no TBI to blame it on. My current significant other has the TBI, which is why I'm here. The legal expression I've heard from my attorneys is, "the high tide rises all boats" which is why no one cares how child support is spent--it's expected that the breadwinner will keep everyone able to spend as they did before...except the breadwinner. Thank God it was only 1/2 the life of the marriage, as I had learned of CA's marriage of duration law (10 years). Otherwise, I could have been supporting him the rest of his life.
I’m so sorry your feeling like this. My husband had a brain haemorrhage 2 years ago. He is not the man I married but doesn’t believe that he has changed. My life is nowhere near as hard as yours sounds but every day I feel less and less connected to him. I tried to seek help from relate and a counselling service through my GP but they couldn’t help. I am desperate for someone to talk to who knows and understands what it is like to live with someone after stroke. I have tried and tried to find help groups but they don’t exist. I feel very lonely and trapped.
My husband had a hemorrhage stroke in 2018 while we were on vacation celebrating our 5year anniversary. Our anniversary was the 17th and I gifted him with an exam showing we were finally pregnant after a few years of trying!!! 5 years of marriage, finally having our first child.. We were in the best space possible.. The last day of our vaca 21st.. He had a stroke..49 days in ICU they told me he probally wouldn’t advance past vegetative state.. He woke up and I feel like life returned to my body.. We were together 10 years before we were married.. college together… traveled the world together! We were literally best friends.. we’ve been through everything together and if I could design a perfect spouse it would be him.. literally he kept me hungry to be a better person, better wife, better friend.. I couldn’t wait to parent with him.. He promised to always protect my heart and smile.. and he did… He was perfect .. I felt so lucky to have him as my person!! We loved each other in a way I never seen before.. He was kool, funny, fly, smart.. if we were traveling to Dubai or watching reality shows it didn’t matter because both were equally fun!! I loved the way he loved me… I felt confident in my position as a wife, i worked really hard to make sure he was happy, we were happy and everything was as we wanted.. the one thing I loved the most about him was how hard we both worked to make sure each other were happy!! I felt so successful in my marriage.. it was the thing I was most proud of!! I loved how we mastered keeping our individuality, while being a team.. it took us a while to marry because it was so important to us both.. to do it the way we felt was right.. imagine I went through a whole pregnancy not knowing how he would recover… fast forward 3 years passed and He’s came along way.. I’ve tried everything there is that I can find… and Ofcourse insurance covered nothing.. our financial situation changed ofcourse, but we’re ok.. my life literally changed and I’ve spent the last 3 years helping him get better.. he can only move his right arm, neck and head… he can’t control any other muscle in his body… He still speaks five languages and his memory is really good, he remembers people, but not really events.. his memory kinda erased the last 7-8 years.. our son is almost 3 and as happy as I am.. I feel like I’m mourning my husband.. he has frontal lobe damage so his personality has completely changed.. He’s so mean to me 75% of the time. He has 0 empathy and the main thing he cares about is food and being changed.. 25% of the time I get to have a piece of my person back, but it’s not the same…. I’m so angry at him because I want my son to know his father the way he was.. I feel like he got cheated.. I always knew if I had a son I would want him to be just like his dad. He literally was my personal Google, stylist, chef .. man I miss him.. I try to stay positive and include him in everything and remind him that he shouldn’t focus on what he lost, but focus on what he has now.. and our son adores him.. he thinks his dads wheelchair is so kool.. I get so angry when he doesn’t react to our son or try to do anything with him.. Literally he lived for the day he had a son and now it’s here we have this amazing little kid that looks identical to him and I feel like he can careless.. but he wants to care, he wants to get better so bad.. I try so hard to enjoy the family I have and make the best of it.. but it’s so hard and I’m drained… I feel so sad because I believe he would be everything I needed if I had the stroke.. however I’m starting to have so much anger in me. How do I love someone who is nothing like the person I loved.. I use memories and the person he was to keep me going..but I’m burnt out.. for example in anormal day he might call me the B word 20 times on top of fat ass, stupid, dummy and this is from a person who didn’t cuss before… we no longer share the same dreams, everything I loved about him is gone.. Even his voice is different and I’m so sad. I’m happy about my son, but I find myself always thinking about what should been.. I’ve even caught my self speaking of my husband in past tense.. I’m so lost and confused.. he’s 42 and I’m 38 and I couldn’t imagine my life without him, but I also can’t image the rest of my life like this.. our life literally revolves around him.. He has a nurse so that helps a lot, but even when I’m not physically doing for him. Mentally I’m still busy with him. I’m so sad, so broken and I know life has to go on because now I have a son that needs me to be everything for him… I feel like I fall short as a mommy because everything I have goes into my husband.. financially, mentally and physically I am drained and I just don’t know what to do… how long can I love him based off what use to be.. because there is nothing new.. I don’t like him, but I know he needs me and I feel bad for how I feel because I know his mind is broken and he’s not the person he wants to be either.. this just isn’t fair
This makes so much sense to me my husband suffered 3 strokes that have left his eye sight to the left missing (tho he says it’s not until he walks into something, then has an excuse as to why for everything ) left leg is weak and not much movement in left arm. Dwells on how he used to be and decisions that were made when he was hospitalized for 127 days all due to Covid, but is getting worse instead of better he’s so depressed now he’s angry, mean and mad all day and I am his punching bag I get it but he too was the man who could fix everything he is 43 and only missed 1 day of work in the 23 years and never late we shared the same work ethic same everything we were such a power couple and now he feels everything has been taken away and blames me for everything and tells me I’m playing the victim role! I had a brain tumor removed in 2001 and it left me dealing with depression but he always stood by me was my rock and eye opener now I am left to my own depression and his depression I am exhausted all the time doing my best but he doesn’t want to go to Pt or OT he just wants to die everyday all day no matter what I do or say he just wants to fight and emotionally break me down I help him with everything but he makes it so hard his short term memory has been affected he doesn’t sound the same he isn’t the same person I also feel alone and guilty waking up everyday with such hope it’s the day my prayers are answered and he comes back I know he wishes the same, this is only 14 months in and already i am having issues dealing with this and processing this I don’t know what to do he also had a 20 minute seizure during his stay that really put him backwards even more we have 4 boys 3 still live at home but he is mean to them too he’s compulsive and wants things I hate telling him no and I know this isn’t his fault but he’s to the point now he tells me he hates me we are doing this alone I have no family he does but their not helpful at all and his friends have ghosted him he says he wants to go places but 5 minutes into anywhere he’s ready to go he hurts all the time has headaches everyday I am feeling the physical pain of my emotional deficiency I don’t know how to get him the help he needs he was a very Christian man and now he’s turned on God too I don’t know what to do either theres no help no answers no one that really cares I’ve had to request things at dr’s offices based on research our healthcare providers don’t offer anything - answers, support, explanations etc so I’m left on my own again. Prayers go out to caretaking spouses dealing with these situations carrying the weight of the world on our shoulders! We are not alone we only feel alone.
I know how you feel. I wish I had someone to talk to as well. My husband had a massive stroke a year ago. My life turn upside down. I am the caregiver now as well. I work full time and am raising my kids. He is a shell of who he was.
I had been married over 30 years when my husband had a stroke. I filed for divorce about a month after he was home from rehab due to his irritability. After 4+ years, I am still struggling with my decision, but his behavior has worsened. Down deep, I still love him but do not like him. He has caused so much anguish. I understand what you are going through. I strongly regret not going for counselling. We both asked for it at different times, but never connected. One of us each time was not willing.
I agree my husband had a massive stroke he constantly asks for a divorce days i need to be happy and not live him like this but turns around and days I love you I'm sorry for everything is very confusing so yes these studies are not very accurate if they are just interviewing the patient.
I love my wife, who suffered from several major strokes as a young mom, but I love her like one of the kids - a dependent; not someone I want to take on vacation to "get away from it all." When I'm at home, I feel like I'm at work. I look forward to bedtime more than anything else, and I drink to get there.
Suicide?? Oh yes. I went from fearing she would kill me in my sleep, as she was so resentful toward me early on, to fearing she would kill herself, and now I have felt suicidal for a few years, as she appears to have plateaued and accepted it.
In another year, I will have been married to the neuro-normal version of my wife as long as I have been with the survivor version. It's taken a massive toll on my physical and mental well-being. My earning potential is still high, but my actual earnings are low because I've developed the, "what's the point?" attitude toward money. I finally see it affecting my kids, and now I am finally getting out.
There's nothing I won't do to support her and help her live a full life, but I can't stay married to her. That special relationship is designed for two cognitively equal partners who can count on one another and actually understand each other and the world around them, even if they disagree about all of it.
It's hard to believe I can be happy again, but the people who know me best assure me that I can so here I go! F$&% it. Can it get any worse??
Sonofa!*÷&% Thank you "killin me!" For finally giving me the WORDS to express what I need & will NEVER have again with this wretched bully that I've been shackled to for more than half of my life!!
That's Precisely It!! A "Special Relationship Between Two Cognitively Equal Adults"!!
Just knowing what to CALL IT IS HUGE! To sleep & not fear my bedroom door being kicked open in a rage b/c He can't find His sunglasses!! Not being smacked because I spoke during the VIDEO he was watching... Never again, getting shoved across the room for trying to make Him answer my question!
I have NO idea what the Hell I'd even do with myself? But I have tried everything in my power to draw out the man I married, from that cruel, sadistic blowhard who's taken over his body! But I cannot... I catch a glimpse of him every so often... But never long enough. I've tried so many times to explain to Him the differences between the two of Him...pre & post.
But nope.... It's ALL Me. His best friend, the best man at our wedding, died 2 years ago.... My husband couldn't be bothered to go see him on his deathbed.
Seriously? His very best buddy of 35+ years & it's all MY imagination?
Yeah.... I very well may be everything he says.. Crazy, stupid, worthless, useless, selfish...etc. Fine. But He is most assuredly NOT the man I married. I've thought about suicide more times than I can count... He's taken everything. My youth, my house, my kids...
I don't even have my wedding rings. My health is sinking, My dignity a thing of the distant past... Pride is a luxury I can no longer afford. I realized that the first time He withheld food until I completed the tasks "he'd assigned" me before leaving..
He locks it in the car.
Ain't that nice?
For this, I ditched Med school?
Yep. Well, he's right about one thing. I AM stupid.
thanks for sharing. I feel the same. Sometimes i wish i had listened to the doctor's advice. So hard to let go at first, right now i have regrets. We both should be happy right?
THANK YOU! My husband had a massive stroke in Thanksgiving 2019, at 41 years old. I 100% relate to every single thing you said. I often think that I'm married to the shell of the man who was my absolute everything. My person. It's heartbreak every single day.
And you're right, I get a lot of "be grateful" and "stop focusing on the negatives" from relatives, especially his relatives. They do not see the every day struggle. They do not live with us to see how it really is, or have to be at his whim all day until 11:00 when he goes to bed. So much nagging. But it's not regular nagging, he has severe speech problems and nagging takes at least ten minutes to get the nag out.
I feel so guilty for the way I feel and am grieving so hard right now. He was so smart, so capable of literally anything, such a good dad, a great sense of humor, and was super charming. I, and my kids, lost everything. No one gets it.
I'm with you! My husband was the best smart hard-working and excellent father he had a stroke while riding a skateboard so his brain injuries are pretty bad
I truly understand. I have been married to my husband for 17 years. I met him after his brain injury. I thought I could handle it but its been a nightmare. He has cheated on me numerous times. The depression got so bad that food became my comfort. I ballooned up to 300 lbs. And no one understands how you feel or what you're going through. I finally built up the courage to leave him. I had lost 100lbs and decide to live for me. Well I guess he couldn't handle me leaving and turned into a complete mess. Started messing with Coke and his life went down hill fast. Well guess who came to the rescue.... Me and now I'm back at square 1. At first he was doing amazing as for us. But now he's back to his old selfish ways. I'm tired and want out but no one else gives a crap but me. I think knowing he's my daughters father and I try so hard. He does work. He was laid off due but called back. He's an amazing worker. Everyone loves him on his job. All his friends love him too. But when it comes to me I'm treated less than. I got a taste of freedom and it was amazing
I have felt like this for years and have tried to leave only to give it one more try... I won't go back again. The support groups we attended was for patient with care giver. Not the place to vent or talk about what caregivers see and feel. The violence has gotten worse. . Unpredictable. My God is good and He wants me to have peace.
My husband had a stroke december 2019. He was 36 at the time. We have 4 children. I feel you on soo many levels. Try thus Facebook group if you have not already found it. This group is for caregivers to go and vent or share the journey after TBI of your spouse. And when I say there is no judgment, I really mean it. They wrap you in encouragement and understanding. They have become my virtual family from all over the world! My name is Krystina Butchee. If you join feel free to take me in your introduction post. I would love to greet you and know that this message has reached you!
Thank you for sharing the group! I'm in a few others, but of course its both men and women in them, some are caregivers as a profession, caring for other family members, friends, neighbors...
it's different when it's your spouse, your person that you found after so many years of searching and heart-break, only to watch them (or find them, experienced both, don't know whats worse) then learn to try to help them as much as possible, but they refuse to help themselves.
in a marriage/wifehood group a post was made asking if someone would stay if their spouse became disabled. I made a simple comment asking the people not to judge those who HAVE lived through their spouse becoming disabled in one way or another and choose to leave. Of course, I get back the angry 'In Sickness and health' rant. I gathered, most of these people have never 1) been married or 2) experienced what that actually means. Becoming a caregiver to a spouse who is cognitively not the same, being their support system for the rest of your life.. marriage is about sharing the load. yes sometimes one needs more support due to life events, but when it comes to being a spousal caregiver for someone with a disability, you will never have a chance to get the support you need from them. how is that right, how is that fair. As a woman of faith, it's very difficult to believe that this is what God had in store for me, the life He wants for me. Oh but just stay the course, and when you come through the otherside you will be stronger for it.
Will I? Or will I be dead, if not literally, then some part of me is gone, died, life, dead, and there is no light at the end of the tunnel. It's just this, for the next 40-60 years. How can a loving God justify that?
I'm with you and can feel your pain because I am living it too for the last 13 years. I struggle with guilt because of how I feel. I have had counseling several times. He refused to go. The help there was minimal. We divorced 8 years ago. The day I moved into my new house, my mom had a stroke. I had also become the caregiver for mom, dad, and now my ex- husband. No other family members are available. My kids are also suffering, but never talk to me about it. Moving to a new location left me physically free. I am no way near mentally, emotionally, spiritually, or financially free. I wonder how my kids really feel about me leaving. I think my whole family is angry with me, but offered little to no support. One day I ask our priest about getting a divorce. He knew the circumstances and said "God does not want you to be unhappy." The thing is---it's hard to be happy either way. I am trying.
I am 29 years post injury of Train vs Firetruck. Separated 3 months after 9 years. More Rehab. Back together after recognizing TBI survivors have a responsibility to attempt to pull their own weight in the marriage. Still lots of tough going. Now 45 years of marriage and looking at Marriage Fitness by Mort Fertel. Rebuilding marriage with positive steps of love.
Never give up; just keep looking for positives and focus on God and Love!
I agree, I hate my life too!!!
I want a referral for a attorney in So Cal. Area To help me with divorce proceedings to my TBI husband, whom I have been a caregiver to for 37 years, and I am so tired and neither of my families can help, nor do they want too.
Yep, at first everyone says "if there's any way I can help, let me know" but not one person really means it. In the end they just tell you to get over it.
2007-2008 Was a long time ago something's I can relate to and yes they haven't changed. One thing that has complicated marriages where one spouse has suffered a brain injury is the internet. TBI's change personalities and all of a sudden your spouse is a stranger.
For some reason or another one thing I have found is that people who have suffered a TBI are very gullible and easy victims of romance scams or any kind of scam for that matter. More often people who have suffered a TBI will play word games on the internet to try & improve their memory.
When playing these games on the internet usually a word game. Someone they're playing with talkes him/her into going off platform. Next thing you the person with the TBI injury is disclosing all kinds of personal information.
The TBI victims often disclose the type of injury they have, the memory issues they suffer. How they're feeling lonely depressed suffering from insomnia and of course the scammer uses all that information to scam them.
I often wish the internet or cell phones had never been invented. Because they cause so many problems with for people with medical conditions although I'm sure they save lives in many cases in fact I know they do but my point is the knife cuts in both directions.
I can't live with him any longer. He is luckily independent and functioning in many ways. However the emotional wasteland is killing me. I no longer exist in his mind.
Yes i know what your meaning my husband had a bleeding one, with brain surgery he is so different, he doesnt care about bathing or brushing his teeth, he used to be syoer clean, and he never talks to me, hes either in his phone watching car accidents and grusome things then he is a alcoholic drinking everyday making my life a living hell screaming lying about me, and its continous i finally ended up getting cancer, yes no one too talk too, i just dont know what too do
Has Anyone delt with AVM removal/ brain surgery, and after effects? My spouse had this surgery 3 months ago and there some changes happening, it bleed and cause seizure and stroke like symptoms. Our marriage wasn't at it's best but 3months prior to this happening in though we were on the mend, but now I'm being accused of emotional abusing him our whole 10 yrs of marriage, and accused of making fun of him, and my family is being accused of things, were headed in separate directions now.
omg i feel this so bad. My wife had an aneurysm rupture. Physically she has been relatively untouched. She started coming up with all these crazy accusations. Now post clipping and stuff she is convinced that i beat her till her aneurysm ruptured. I sped her to the hospital when she couldnt string together two words and the thanks i get is accusations. Abuse, rape, theft, infidelity, the list goes on and on. None of it is real and it has torn our marriage apart. She moved out a few weeks ago to live with her parents. Its soul crushing to lose the love of your life to false memories.
I can absolutely feel your pain. My 50 year old husband of 17 years suffered some type of secondary thought process changes after a stroke. He physically was recovered but he began accusing me of cheating. Everything was a sign of me cheating. I couldn't even get him to see any logic, over the next year this continued but became more extreme. I couldn't even see him as a friend let alone a husband at this point. Eventually the accusations were outlandish, I slept with all his co workers (like 13 men) so he had to quit his job of 11 years, then I was involved in prostitution, then I was married to another man and changed my wedding ring. After that escalated into a violent attack I left. He then began saying I was poisoning him because he only ever got back aches or tooth aches when I was there. He eventually attempted suicide and was transfered to a behavior health hospital. They said he had delusions, paranoia, depression but no real diagnosis. Medication took away the symptoms but then I had a whole different personality that was needy, insecure, etc.then after being prescribed meds for back pain the symptoms the origional symptoms returned. Now I'm running an escort service and having mail delivered to my neighbor and slept with my son in law and it goes on and on. He stopped all the things we enjoyed doing together. Listens to different music. He is so different I can see as long as I have held on, hoped and fought for the man I fell in love with, he's gone. Yesterday he texted and asked if ill pay half the cost for a divorce so today I rented a storage and began moving things out while he was at work. He calls and acts surprised like are you leaving me? Don't leave me. Its a nightmare and I want to have compassion but I am just frustrated, grieving but accepting that the man I loved is gone and at the same time bitter, angry and miserable. Im done.
I should mention that my husband lost the ability to read almost anything; cannot write most words; isn't supposed to drive, but does; can't remember what he is doing as he is doing it, cannot stand crowds, sunlight, noise, changes in weather, birds chirping, etc. His math skills are gone. He cannot follow a grocery list or plan at all. He cannot visualize people or concepts. He is totally self-centred and only cares about others in relation to how they affect his life or well-being. His own mother could be dying and he would only care if it meant he had to change his schedule to see her. His schedule is very important to him. Don't change it! He perseverates on everything. "You said we'd go for a walk tonight. Are we going for a walk tonight? When are we going? You said we were going." Toddlers are much easier to deal with. His moods are like a roller coaster. Others think he is nice and seems reasonable. Sure he does--trying cooking a meal with him and you'll quickly get an idea of what it's like to live with him.
I know exactly what your dealing with, i am dealing with almost the exact thing yet Dr lies and says hes doing good how could he know he doesnt live here putting up with the abuse and lying cold ways
My experience with my wife exactly to the tee.
Nobody seems to outline the toll it takes on the spouse who has "done without" for the many years while being the constant caregiver for the person who seems to obvious to the huge work required to maintain her in the home.
I ended up retiring early to make it happen and at times I feel like I'm wasting my time when she refuses to help-herself by going on walks on our ranch on my arm...
Just doesn't make sense.
Your post resonates with me and the situation with my fiancé. We have been together for 4 years and he’s been injured for the last 14 months of that. I literally have boxes and bins loaded with my stuff by the door to move out today. I love him so much but life with a Traumatic Brain Injury survivor is so unpredictable (a 21 yr old kid slammed into him on his motorcycle and he went flying with no helmet landing on the asphalt). So there’s many days that I think “I’ll just leave. And the I can start my life again normal” (I’m 46). But then I have so much guilt and sorrow for him. And what happens to him? His family won’t help (He’s 53). I do love him but the selfcenterness and mood swings are almost unbearable. I cant even imagine going through the motions of any sort of love making because I’m so hurt by his actions almost on a daily basis. He’s say he’d be better if we started having sex again, but honestly it’s just going through the motions for me anyway. His body doesn’t even really move or wok like that right now. But lately it seems to be the center of a lot of our arguments because he thinks I don’t desire him. What do I do? What have you done? No one has answers and I’m getting to the point that I don’t care anymore about anything. I’ve completely let myself go as a result of being his sole care giver. I’ve gained weight. I don’t do my nails, hair, or any kind of exercise. I’m going into a deep depression. And he keeps saying “why? It didn’t happen to you?’. We have not seen a counselor together or induvuzkly. Because well who has time between 3 different therapists (PT, OT, SPEECH) 3 times a week, doctors, and trying to keep up with my jobs I do from home plus his and my responsibilities. Is it a loss hope? Do I unpack today? Or do I run and not look back? How have you guys gotten through this? How do you still find love in your heart for someone who gets mean and isn’t the person you fell in love with?
I hope you left, cause your still young you dont need too feel guilty i am going through the same thing the screaming, the abuse, name calling, i got cancer from dealing wirh this for 4 years it doesnt get better only worse
Oh please leave and build yourself a happy life before you marry. This comes from living a life of hell that Im trying to release myself from now. Head injury is a tough one to change so unless you are prepared to give up your happiness to make them content, get yourself out. Love and light. We know apparantly they "cant help it" but that doesnt change the reality for the carer.
We're only a year out from my husband's stroke. I am so devastated and grieving all the time, my person is gone. But not gone. I get no closure because I have to watch the struggle, I have to do everything his way, and like you said there are a million appointments to deal with. I was already suicidal when this happened and to say it's gotten worse is an understatement. But I have three kids, and now with no other parent to be there, I really can't do it. So I am here solely to exist for others, but now I just don't have anyone to be there for me. I can talk about something for a bit and then he'll point at something random and not even acknowledge anything I've said. I don't have a partner anymore, I have another dependent.
As far as sex goes, I couldn't want it less. It makes me cry every time because it's almost impossible due to hemi-paralysis and size difference, and it's just another painful reminder that my person is gone.
I love him so much, it kills. But really, I love the person who's gone forever, and I want to have it be good enough, I just don't know if staying is the best choice for me because if how much emotional turmoil I'm in every single day.
I feel so bad for you, i feel your pain. Yes you cant have a conversation when im talking he just starts talking about something random, or gets up and walks outside like your not there
I understand what you are going through. My husband was diagnosed in 2017 with low-grade glioma which was located in area of his speech and memory. I lost my stepfather in 2015, then dealing with my then fiance diagnosis and got right to work on finding him the best brain surgeon at Sloan kettering. We got married on Sep. 7th, 2017 and he had his operation on Sep. 8th, 2017...yes very next day. His surgery was successful as they were not sure if they could get all of the tumor out because the tumor had tentacles which were entangled between his healthy brain and tumor. He had a quick physical recover and went back to work in 3mos...however, he refused seeing a neuropsychologist so he has not dealt with any issues with his brain post surgery such as anger, impulsivity, short-term memory...add to that he likes to blame other people for everything especially me(he was like this before tumor). He does not write anything down, does not put items in same place where he can find them(we have a letter tray) or uses a pill box so he can recall if he took his meds, so basically im his memory. January 31, 2017 his father literally dumped my husband's uncle at our home where his uncle moved in our guestroom for a month and then our upstairs apt. November of 2017 his uncled has a quadruple bypass, so i was taking care of my husband with his daily needs and then his uncle(who moved back into our guestroom), all while trying to process the death of the fiance I knew with the husband i had to get to know. I have been pushed, had things thrown at me, accused of cheating-because i'm too damn tired for sex-my husband always asks-"What are you tired of exactly?" it drives me crazy!!! now he wants a divorce because he is no longer attracted to me and he says because I have caused him to die little by little by denying him sex. I explain to him that I do not have a sexual appetite. Doing all this while working a full-time job,( luckily for me my position was remote) it is exhausting and lets not forget the attitude that working from home "is not work". When he argues with me for mundane stuff..it seems he just wants to start a fight-it seems my needs dont matter. I went to a therapist to deal with caregiver's stress, which my husband does not believe in. so of course therapy is out...we had one couples session and that was a disaster, the therapist tried to help him understand my point of view, however all that happened as a result was him twisting the events in a way for him to make sense and blame me of course. So, I say to you and all those uninjured spouses, or significant others that are pondering what to do- do what is best for you! We matter, our feelings are real TBI is nothing to play with especially in a pandemic...You only have one life to live -how do you want to live it?
Comments (228)
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.
Anonymous replied on Permalink
The news that people stay married is not encouraging for the caregiver. I love my husband but he is a shell of himself. I am still working full time, doing all of the house work, we have lost all of our friends. I love him but I do not like him. I resent him. And Everytime I consider divorce, for my own mental health, I am guilted by family members, or by friends, or...told by lawyers I would have to give this man half of my salary for the rest of my life. We have been married 7 years. Five and a half if those years he has had this brain injury.
I considered suicide, many times. I honestly don't know why I am still alive. I don't want to be. I hate my marriage. I hate my life. I love him but I don't want to live the rest of my life like this.
So yes, to the injured , this is hopeful. For caregivers it is proof, yet again, that we don't matter. That we deserve to be gaslighted by our brain injured spouse. We deserve to have to do all of the house work, make all of the money, pay all of the bills, be alone. Completely alone.
So go ahead and claim this is encouraging but maybe also work on finding out how to support caregivers. We are people too.
Barbara replied on Permalink
This is exactly my situation. My husband has SBI . I feel exactly like you. Its not his injury its actually ours because I feel my life has been more affected than his. Yet made to feel guilty about wanting to leave. Im exhausted from arguing everyday and being gaslighted by him. Stay strong. Im doing my best to. Love and light to all the carers and spouses doing the hard work with no recognition.
Anonymous replied on Permalink
I agree with you 100%. I am alone whether I am home or out with friends. It's a catch-22, a no win whether you stay or leave. I did divorce my husband and left physically, but not emotionally or mentally. It's stressful whether you stay or leave. We as caregivers are not appreciate. We are overworked, misunderstood,ALONE and live with false hope if any hope at all. TBI is permanent and leads to more and more health problems and questionable behavior. It's an inevitable downhill slide. I am not a pessimist but a realist. I am a caregiver to my ex-husband now (why?} (guilt) not knowing how long this will continue. I've learned to be alone, not expect anything from him, and lost the desire to pursue a future with another. In order to keep peace I've lost myself. Thank God for my church where I find some joy. Signed, Lost, Lonely, and Tired
Brian M. replied on Permalink
I am so sorry to hear about the things you have experienced. I had a stroke going on 3 years ago now. After a 34 year marriage and 3 weeks of the hospital, my wife announced she was going to divorce me to our 21-year-old son. After all, things looked pretty bad. I couldn't sit upright in bed by myself without falling over, the left side of my face was sagging badly, my left arm and leg didn't work so I couldn't walk. I had minor cognitive issues and couldn't read for some time. Fast forward to now, I am divorced, walk with a limp, type one-handed, and made a lifetime of money in the market since COVID19. I am dating a fantastic woman that lost her husband to ALS after 7 years of caring for him. In that time as a caregiver, she had to find outside comfort from another to continue to care for her much loved husband. The story is to say there are many twists and turns in a person's life, where unexpected things occur and develop that my offer happiness as long as life continues. Pray for God's grace and search for an acceptable change. You just don't know! God bless and I wish all of you well
Natasha Moore replied on Permalink
Brian can you please help me with some advice? My husband had a stroke 5 years ago today. That was 2 months before our wedding day. Right after our marriage he changed. He was physically ok. I never had to take care of him, but mentally and emotionally he is damaged goods. He isolates himself, stopped communicating, he's always in pain in his back and legs. I thought it was sciatic nerve damage, but after research I just found out an hour ago about this drastic personality change. He just told me today that he's no longer in love with me, he's unhappy, and he wants out. Well there's one problem. I have nowhere to go. I have been a great wife to him and was a great girlfriend for 10 years before marrying him. We were so in love before the stroke. Please help me because I am lost!!
Kellie replied on Permalink
Hi a last I've found someone who can relate to what I'm going through. My partner suffered a cardiac arrest at aged 34... We were also 7months pregnant with our first baby.... Both very happy and engaged.... This happened and myself n his best friend were with him... His best friend did cpr ASAP and saved his life. It was so awful for me to see him like this and then told he prob won't make it and if he does he will be brain damaged. Long story short he suffered, we had our son 2 months after. When our son was 2 I found out we were having another child. I then descovered he had had an affair with a friend... We split up and I was devasted. We had a year apart and I decided we had to much to lose, so we got back together... It was hard but great at first... But then he changed, was snappy and just not his usual loving happy self.... After a year, he said he wasn't happy and left!!! I'm so lost right now and can't understand why he would do this to me and his own kids.... He's moved in with someone new after 6 months of knowing her and lives with her teenage girls... Hardly sees our 5 and 7 year old. I'm just left shocked, hurt and very lonely and sad. He was my soul mate before the cardiac arrest and now I feel he's a stranger..
Anonymous replied on Permalink
Natasha,
I am so very sorry to read about your situation. I can only share my personal experience as the one that had the stroke. Specifically, my marriage was in a difficult place when the stroke occurred. It could best be described as in a benign neglect phase for both of us with neither particularly happy. So when an opportunity arose to exit, she did. Texas is a community property state so all money/assets were split 50/50 including costs for the attorneys. With help I moved to an apartment I could afford from cash reserves. During the following year while going through the divorce process I concentrated on how I might make a living with my cognitive limitations and was able to find some success in an area I always had interest in which in my case was investing in the financial markets. At the very end of the first full year of being in the apartment I felt a strong need for championship and met the lady I'm still with, two years after our first meeting. Although I felt very hurt and wronged by my ex, for the timing and the way things progressed, it has been surprisingly ok overall. Now for reasons I still don't understand, the weeks after the stroke I was very angry with her or anything she would say or do around me or any help she would offer me. We experienced never ending arguments, it was best for both that I moved out. I'm unsure what I've shared has any value for you? I can only say if you love the man, find a way to give him space to experience what separation will mean for him and you. If the relationship is not yet broken from your perspective, remain caring and helpful where you can, however earnestly prepare for a new life direction. God bless and good luck with this journey.
Anonymous replied on Permalink
why would you have to give half your salary if he is on disability
Susan replied on Permalink
If his disability is significantly less than the household income was, that is probably why. I am not sure what state you are in, and this is not legal advice, but Ive experienced and been told that in CA, the premise is that if you are the breadwinner, you have to keep the ex in the lifestyle they were accustomed. I had to pay 1/2 of my take home pay to my ex who wasn't even disabled! He refused to get a job, so after 8 years, I gave him 90 days to get a job or I was filing for divorce, at least on paper. He got a 2nd girlfriend (yes, had already been cheating on me and got a 2nd) and a divorce attorney. And no TBI to blame it on. My current significant other has the TBI, which is why I'm here. The legal expression I've heard from my attorneys is, "the high tide rises all boats" which is why no one cares how child support is spent--it's expected that the breadwinner will keep everyone able to spend as they did before...except the breadwinner. Thank God it was only 1/2 the life of the marriage, as I had learned of CA's marriage of duration law (10 years). Otherwise, I could have been supporting him the rest of his life.
Kim replied on Permalink
I’m so sorry your feeling like this. My husband had a brain haemorrhage 2 years ago. He is not the man I married but doesn’t believe that he has changed. My life is nowhere near as hard as yours sounds but every day I feel less and less connected to him. I tried to seek help from relate and a counselling service through my GP but they couldn’t help. I am desperate for someone to talk to who knows and understands what it is like to live with someone after stroke. I have tried and tried to find help groups but they don’t exist. I feel very lonely and trapped.
Sasha replied on Permalink
My husband had a hemorrhage stroke in 2018 while we were on vacation celebrating our 5year anniversary. Our anniversary was the 17th and I gifted him with an exam showing we were finally pregnant after a few years of trying!!! 5 years of marriage, finally having our first child.. We were in the best space possible.. The last day of our vaca 21st.. He had a stroke..49 days in ICU they told me he probally wouldn’t advance past vegetative state.. He woke up and I feel like life returned to my body.. We were together 10 years before we were married.. college together… traveled the world together! We were literally best friends.. we’ve been through everything together and if I could design a perfect spouse it would be him.. literally he kept me hungry to be a better person, better wife, better friend.. I couldn’t wait to parent with him.. He promised to always protect my heart and smile.. and he did… He was perfect .. I felt so lucky to have him as my person!! We loved each other in a way I never seen before.. He was kool, funny, fly, smart.. if we were traveling to Dubai or watching reality shows it didn’t matter because both were equally fun!! I loved the way he loved me… I felt confident in my position as a wife, i worked really hard to make sure he was happy, we were happy and everything was as we wanted.. the one thing I loved the most about him was how hard we both worked to make sure each other were happy!! I felt so successful in my marriage.. it was the thing I was most proud of!! I loved how we mastered keeping our individuality, while being a team.. it took us a while to marry because it was so important to us both.. to do it the way we felt was right.. imagine I went through a whole pregnancy not knowing how he would recover… fast forward 3 years passed and He’s came along way.. I’ve tried everything there is that I can find… and Ofcourse insurance covered nothing.. our financial situation changed ofcourse, but we’re ok.. my life literally changed and I’ve spent the last 3 years helping him get better.. he can only move his right arm, neck and head… he can’t control any other muscle in his body… He still speaks five languages and his memory is really good, he remembers people, but not really events.. his memory kinda erased the last 7-8 years.. our son is almost 3 and as happy as I am.. I feel like I’m mourning my husband.. he has frontal lobe damage so his personality has completely changed.. He’s so mean to me 75% of the time. He has 0 empathy and the main thing he cares about is food and being changed.. 25% of the time I get to have a piece of my person back, but it’s not the same…. I’m so angry at him because I want my son to know his father the way he was.. I feel like he got cheated.. I always knew if I had a son I would want him to be just like his dad. He literally was my personal Google, stylist, chef .. man I miss him.. I try to stay positive and include him in everything and remind him that he shouldn’t focus on what he lost, but focus on what he has now.. and our son adores him.. he thinks his dads wheelchair is so kool.. I get so angry when he doesn’t react to our son or try to do anything with him.. Literally he lived for the day he had a son and now it’s here we have this amazing little kid that looks identical to him and I feel like he can careless.. but he wants to care, he wants to get better so bad.. I try so hard to enjoy the family I have and make the best of it.. but it’s so hard and I’m drained… I feel so sad because I believe he would be everything I needed if I had the stroke.. however I’m starting to have so much anger in me. How do I love someone who is nothing like the person I loved.. I use memories and the person he was to keep me going..but I’m burnt out.. for example in anormal day he might call me the B word 20 times on top of fat ass, stupid, dummy and this is from a person who didn’t cuss before… we no longer share the same dreams, everything I loved about him is gone.. Even his voice is different and I’m so sad. I’m happy about my son, but I find myself always thinking about what should been.. I’ve even caught my self speaking of my husband in past tense.. I’m so lost and confused.. he’s 42 and I’m 38 and I couldn’t imagine my life without him, but I also can’t image the rest of my life like this.. our life literally revolves around him.. He has a nurse so that helps a lot, but even when I’m not physically doing for him. Mentally I’m still busy with him. I’m so sad, so broken and I know life has to go on because now I have a son that needs me to be everything for him… I feel like I fall short as a mommy because everything I have goes into my husband.. financially, mentally and physically I am drained and I just don’t know what to do… how long can I love him based off what use to be.. because there is nothing new.. I don’t like him, but I know he needs me and I feel bad for how I feel because I know his mind is broken and he’s not the person he wants to be either.. this just isn’t fair
Johnny replied on Permalink
Wow you have the same thing goin on an no where to run too
Anonymous replied on Permalink
This makes so much sense to me my husband suffered 3 strokes that have left his eye sight to the left missing (tho he says it’s not until he walks into something, then has an excuse as to why for everything ) left leg is weak and not much movement in left arm. Dwells on how he used to be and decisions that were made when he was hospitalized for 127 days all due to Covid, but is getting worse instead of better he’s so depressed now he’s angry, mean and mad all day and I am his punching bag I get it but he too was the man who could fix everything he is 43 and only missed 1 day of work in the 23 years and never late we shared the same work ethic same everything we were such a power couple and now he feels everything has been taken away and blames me for everything and tells me I’m playing the victim role! I had a brain tumor removed in 2001 and it left me dealing with depression but he always stood by me was my rock and eye opener now I am left to my own depression and his depression I am exhausted all the time doing my best but he doesn’t want to go to Pt or OT he just wants to die everyday all day no matter what I do or say he just wants to fight and emotionally break me down I help him with everything but he makes it so hard his short term memory has been affected he doesn’t sound the same he isn’t the same person I also feel alone and guilty waking up everyday with such hope it’s the day my prayers are answered and he comes back I know he wishes the same, this is only 14 months in and already i am having issues dealing with this and processing this I don’t know what to do he also had a 20 minute seizure during his stay that really put him backwards even more we have 4 boys 3 still live at home but he is mean to them too he’s compulsive and wants things I hate telling him no and I know this isn’t his fault but he’s to the point now he tells me he hates me we are doing this alone I have no family he does but their not helpful at all and his friends have ghosted him he says he wants to go places but 5 minutes into anywhere he’s ready to go he hurts all the time has headaches everyday I am feeling the physical pain of my emotional deficiency I don’t know how to get him the help he needs he was a very Christian man and now he’s turned on God too I don’t know what to do either theres no help no answers no one that really cares I’ve had to request things at dr’s offices based on research our healthcare providers don’t offer anything - answers, support, explanations etc so I’m left on my own again. Prayers go out to caretaking spouses dealing with these situations carrying the weight of the world on our shoulders! We are not alone we only feel alone.
Julie replied on Permalink
I know how you feel it’s so very confusing and soul destroying
Valerie replied on Permalink
I know how you feel. I wish I had someone to talk to as well. My husband had a massive stroke a year ago. My life turn upside down. I am the caregiver now as well. I work full time and am raising my kids. He is a shell of who he was.
Marie replied on Permalink
I had been married over 30 years when my husband had a stroke. I filed for divorce about a month after he was home from rehab due to his irritability. After 4+ years, I am still struggling with my decision, but his behavior has worsened. Down deep, I still love him but do not like him. He has caused so much anguish. I understand what you are going through. I strongly regret not going for counselling. We both asked for it at different times, but never connected. One of us each time was not willing.
Rochelle replied on Permalink
I agree my husband had a massive stroke he constantly asks for a divorce days i need to be happy and not live him like this but turns around and days I love you I'm sorry for everything is very confusing so yes these studies are not very accurate if they are just interviewing the patient.
Killin' me! replied on Permalink
I love my wife, who suffered from several major strokes as a young mom, but I love her like one of the kids - a dependent; not someone I want to take on vacation to "get away from it all." When I'm at home, I feel like I'm at work. I look forward to bedtime more than anything else, and I drink to get there.
Suicide?? Oh yes. I went from fearing she would kill me in my sleep, as she was so resentful toward me early on, to fearing she would kill herself, and now I have felt suicidal for a few years, as she appears to have plateaued and accepted it.
In another year, I will have been married to the neuro-normal version of my wife as long as I have been with the survivor version. It's taken a massive toll on my physical and mental well-being. My earning potential is still high, but my actual earnings are low because I've developed the, "what's the point?" attitude toward money. I finally see it affecting my kids, and now I am finally getting out.
There's nothing I won't do to support her and help her live a full life, but I can't stay married to her. That special relationship is designed for two cognitively equal partners who can count on one another and actually understand each other and the world around them, even if they disagree about all of it.
It's hard to believe I can be happy again, but the people who know me best assure me that I can so here I go! F$&% it. Can it get any worse??
Mama66 replied on Permalink
Sonofa!*÷&% Thank you "killin me!" For finally giving me the WORDS to express what I need & will NEVER have again with this wretched bully that I've been shackled to for more than half of my life!!
That's Precisely It!! A "Special Relationship Between Two Cognitively Equal Adults"!!
Just knowing what to CALL IT IS HUGE! To sleep & not fear my bedroom door being kicked open in a rage b/c He can't find His sunglasses!! Not being smacked because I spoke during the VIDEO he was watching... Never again, getting shoved across the room for trying to make Him answer my question!
I have NO idea what the Hell I'd even do with myself? But I have tried everything in my power to draw out the man I married, from that cruel, sadistic blowhard who's taken over his body! But I cannot... I catch a glimpse of him every so often... But never long enough. I've tried so many times to explain to Him the differences between the two of Him...pre & post.
But nope.... It's ALL Me. His best friend, the best man at our wedding, died 2 years ago.... My husband couldn't be bothered to go see him on his deathbed.
Seriously? His very best buddy of 35+ years & it's all MY imagination?
Yeah.... I very well may be everything he says.. Crazy, stupid, worthless, useless, selfish...etc. Fine. But He is most assuredly NOT the man I married. I've thought about suicide more times than I can count... He's taken everything. My youth, my house, my kids...
I don't even have my wedding rings. My health is sinking, My dignity a thing of the distant past... Pride is a luxury I can no longer afford. I realized that the first time He withheld food until I completed the tasks "he'd assigned" me before leaving..
He locks it in the car.
Ain't that nice?
For this, I ditched Med school?
Yep. Well, he's right about one thing. I AM stupid.
midwesthulaboy@... replied on Permalink
thanks for sharing. I feel the same. Sometimes i wish i had listened to the doctor's advice. So hard to let go at first, right now i have regrets. We both should be happy right?
Anon replied on Permalink
THANK YOU! My husband had a massive stroke in Thanksgiving 2019, at 41 years old. I 100% relate to every single thing you said. I often think that I'm married to the shell of the man who was my absolute everything. My person. It's heartbreak every single day.
And you're right, I get a lot of "be grateful" and "stop focusing on the negatives" from relatives, especially his relatives. They do not see the every day struggle. They do not live with us to see how it really is, or have to be at his whim all day until 11:00 when he goes to bed. So much nagging. But it's not regular nagging, he has severe speech problems and nagging takes at least ten minutes to get the nag out.
I feel so guilty for the way I feel and am grieving so hard right now. He was so smart, so capable of literally anything, such a good dad, a great sense of humor, and was super charming. I, and my kids, lost everything. No one gets it.
Melissa replied on Permalink
I'm with you! My husband was the best smart hard-working and excellent father he had a stroke while riding a skateboard so his brain injuries are pretty bad
Cme replied on Permalink
I truly understand. I have been married to my husband for 17 years. I met him after his brain injury. I thought I could handle it but its been a nightmare. He has cheated on me numerous times. The depression got so bad that food became my comfort. I ballooned up to 300 lbs. And no one understands how you feel or what you're going through. I finally built up the courage to leave him. I had lost 100lbs and decide to live for me. Well I guess he couldn't handle me leaving and turned into a complete mess. Started messing with Coke and his life went down hill fast. Well guess who came to the rescue.... Me and now I'm back at square 1. At first he was doing amazing as for us. But now he's back to his old selfish ways. I'm tired and want out but no one else gives a crap but me. I think knowing he's my daughters father and I try so hard. He does work. He was laid off due but called back. He's an amazing worker. Everyone loves him on his job. All his friends love him too. But when it comes to me I'm treated less than. I got a taste of freedom and it was amazing
Mama66 replied on Permalink
Oh Honey. I do. I truly do.
Frank replied on Permalink
I have felt like this for years and have tried to leave only to give it one more try... I won't go back again. The support groups we attended was for patient with care giver. Not the place to vent or talk about what caregivers see and feel. The violence has gotten worse. . Unpredictable. My God is good and He wants me to have peace.
Krystina replied on Permalink
My husband had a stroke december 2019. He was 36 at the time. We have 4 children. I feel you on soo many levels. Try thus Facebook group if you have not already found it. This group is for caregivers to go and vent or share the journey after TBI of your spouse. And when I say there is no judgment, I really mean it. They wrap you in encouragement and understanding. They have become my virtual family from all over the world! My name is Krystina Butchee. If you join feel free to take me in your introduction post. I would love to greet you and know that this message has reached you!
Stroke caregiving
"Wives" -ONLY-
Steph replied on Permalink
Thank you for sharing the group! I'm in a few others, but of course its both men and women in them, some are caregivers as a profession, caring for other family members, friends, neighbors...
it's different when it's your spouse, your person that you found after so many years of searching and heart-break, only to watch them (or find them, experienced both, don't know whats worse) then learn to try to help them as much as possible, but they refuse to help themselves.
in a marriage/wifehood group a post was made asking if someone would stay if their spouse became disabled. I made a simple comment asking the people not to judge those who HAVE lived through their spouse becoming disabled in one way or another and choose to leave. Of course, I get back the angry 'In Sickness and health' rant. I gathered, most of these people have never 1) been married or 2) experienced what that actually means. Becoming a caregiver to a spouse who is cognitively not the same, being their support system for the rest of your life.. marriage is about sharing the load. yes sometimes one needs more support due to life events, but when it comes to being a spousal caregiver for someone with a disability, you will never have a chance to get the support you need from them. how is that right, how is that fair. As a woman of faith, it's very difficult to believe that this is what God had in store for me, the life He wants for me. Oh but just stay the course, and when you come through the otherside you will be stronger for it.
Will I? Or will I be dead, if not literally, then some part of me is gone, died, life, dead, and there is no light at the end of the tunnel. It's just this, for the next 40-60 years. How can a loving God justify that?
Rhonda replied on Permalink
I'm with you and can feel your pain because I am living it too for the last 13 years. I struggle with guilt because of how I feel. I have had counseling several times. He refused to go. The help there was minimal. We divorced 8 years ago. The day I moved into my new house, my mom had a stroke. I had also become the caregiver for mom, dad, and now my ex- husband. No other family members are available. My kids are also suffering, but never talk to me about it. Moving to a new location left me physically free. I am no way near mentally, emotionally, spiritually, or financially free. I wonder how my kids really feel about me leaving. I think my whole family is angry with me, but offered little to no support. One day I ask our priest about getting a divorce. He knew the circumstances and said "God does not want you to be unhappy." The thing is---it's hard to be happy either way. I am trying.
Karen replied on Permalink
I agree with you completely. Every burden goes to the spouse. No sustainable system to help us. I feel trapped by someone I don't even like anymore.
Jim Mickelson replied on Permalink
I am 29 years post injury of Train vs Firetruck. Separated 3 months after 9 years. More Rehab. Back together after recognizing TBI survivors have a responsibility to attempt to pull their own weight in the marriage. Still lots of tough going. Now 45 years of marriage and looking at Marriage Fitness by Mort Fertel. Rebuilding marriage with positive steps of love.
Never give up; just keep looking for positives and focus on God and Love!
Cindy replied on Permalink
Your words were my life, my feelings. I hate my life.
Anonymous replied on Permalink
I agree, I hate my life too!!!
I want a referral for a attorney in So Cal. Area To help me with divorce proceedings to my TBI husband, whom I have been a caregiver to for 37 years, and I am so tired and neither of my families can help, nor do they want too.
Anon replied on Permalink
Yep, at first everyone says "if there's any way I can help, let me know" but not one person really means it. In the end they just tell you to get over it.
Rolmbo replied on Permalink
2007-2008 Was a long time ago something's I can relate to and yes they haven't changed. One thing that has complicated marriages where one spouse has suffered a brain injury is the internet. TBI's change personalities and all of a sudden your spouse is a stranger.
For some reason or another one thing I have found is that people who have suffered a TBI are very gullible and easy victims of romance scams or any kind of scam for that matter. More often people who have suffered a TBI will play word games on the internet to try & improve their memory.
When playing these games on the internet usually a word game. Someone they're playing with talkes him/her into going off platform. Next thing you the person with the TBI injury is disclosing all kinds of personal information.
The TBI victims often disclose the type of injury they have, the memory issues they suffer. How they're feeling lonely depressed suffering from insomnia and of course the scammer uses all that information to scam them.
I often wish the internet or cell phones had never been invented. Because they cause so many problems with for people with medical conditions although I'm sure they save lives in many cases in fact I know they do but my point is the knife cuts in both directions.
Anyways there's my two cents worth.
Mama66 replied on Permalink
Oh ABSOLUTELY! My husband also loves chat rooms for people who are
"Married & hating it"!
Isn't that just PRECIOUS?
Anonymous replied on Permalink
I can't live with him any longer. He is luckily independent and functioning in many ways. However the emotional wasteland is killing me. I no longer exist in his mind.
Anonymous replied on Permalink
Yes i know what your meaning my husband had a bleeding one, with brain surgery he is so different, he doesnt care about bathing or brushing his teeth, he used to be syoer clean, and he never talks to me, hes either in his phone watching car accidents and grusome things then he is a alcoholic drinking everyday making my life a living hell screaming lying about me, and its continous i finally ended up getting cancer, yes no one too talk too, i just dont know what too do
Anonymous replied on Permalink
Has Anyone delt with AVM removal/ brain surgery, and after effects? My spouse had this surgery 3 months ago and there some changes happening, it bleed and cause seizure and stroke like symptoms. Our marriage wasn't at it's best but 3months prior to this happening in though we were on the mend, but now I'm being accused of emotional abusing him our whole 10 yrs of marriage, and accused of making fun of him, and my family is being accused of things, were headed in separate directions now.
Anonymous replied on Permalink
omg i feel this so bad. My wife had an aneurysm rupture. Physically she has been relatively untouched. She started coming up with all these crazy accusations. Now post clipping and stuff she is convinced that i beat her till her aneurysm ruptured. I sped her to the hospital when she couldnt string together two words and the thanks i get is accusations. Abuse, rape, theft, infidelity, the list goes on and on. None of it is real and it has torn our marriage apart. She moved out a few weeks ago to live with her parents. Its soul crushing to lose the love of your life to false memories.
Rebecca replied on Permalink
I can absolutely feel your pain. My 50 year old husband of 17 years suffered some type of secondary thought process changes after a stroke. He physically was recovered but he began accusing me of cheating. Everything was a sign of me cheating. I couldn't even get him to see any logic, over the next year this continued but became more extreme. I couldn't even see him as a friend let alone a husband at this point. Eventually the accusations were outlandish, I slept with all his co workers (like 13 men) so he had to quit his job of 11 years, then I was involved in prostitution, then I was married to another man and changed my wedding ring. After that escalated into a violent attack I left. He then began saying I was poisoning him because he only ever got back aches or tooth aches when I was there. He eventually attempted suicide and was transfered to a behavior health hospital. They said he had delusions, paranoia, depression but no real diagnosis. Medication took away the symptoms but then I had a whole different personality that was needy, insecure, etc.then after being prescribed meds for back pain the symptoms the origional symptoms returned. Now I'm running an escort service and having mail delivered to my neighbor and slept with my son in law and it goes on and on. He stopped all the things we enjoyed doing together. Listens to different music. He is so different I can see as long as I have held on, hoped and fought for the man I fell in love with, he's gone. Yesterday he texted and asked if ill pay half the cost for a divorce so today I rented a storage and began moving things out while he was at work. He calls and acts surprised like are you leaving me? Don't leave me. Its a nightmare and I want to have compassion but I am just frustrated, grieving but accepting that the man I loved is gone and at the same time bitter, angry and miserable. Im done.
Anonymous replied on Permalink
I should mention that my husband lost the ability to read almost anything; cannot write most words; isn't supposed to drive, but does; can't remember what he is doing as he is doing it, cannot stand crowds, sunlight, noise, changes in weather, birds chirping, etc. His math skills are gone. He cannot follow a grocery list or plan at all. He cannot visualize people or concepts. He is totally self-centred and only cares about others in relation to how they affect his life or well-being. His own mother could be dying and he would only care if it meant he had to change his schedule to see her. His schedule is very important to him. Don't change it! He perseverates on everything. "You said we'd go for a walk tonight. Are we going for a walk tonight? When are we going? You said we were going." Toddlers are much easier to deal with. His moods are like a roller coaster. Others think he is nice and seems reasonable. Sure he does--trying cooking a meal with him and you'll quickly get an idea of what it's like to live with him.
Gina replied on Permalink
I know exactly what your dealing with, i am dealing with almost the exact thing yet Dr lies and says hes doing good how could he know he doesnt live here putting up with the abuse and lying cold ways
Tim replied on Permalink
My experience with my wife exactly to the tee.
Nobody seems to outline the toll it takes on the spouse who has "done without" for the many years while being the constant caregiver for the person who seems to obvious to the huge work required to maintain her in the home.
I ended up retiring early to make it happen and at times I feel like I'm wasting my time when she refuses to help-herself by going on walks on our ranch on my arm...
Just doesn't make sense.
Samantha replied on Permalink
Your post resonates with me and the situation with my fiancé. We have been together for 4 years and he’s been injured for the last 14 months of that. I literally have boxes and bins loaded with my stuff by the door to move out today. I love him so much but life with a Traumatic Brain Injury survivor is so unpredictable (a 21 yr old kid slammed into him on his motorcycle and he went flying with no helmet landing on the asphalt). So there’s many days that I think “I’ll just leave. And the I can start my life again normal” (I’m 46). But then I have so much guilt and sorrow for him. And what happens to him? His family won’t help (He’s 53). I do love him but the selfcenterness and mood swings are almost unbearable. I cant even imagine going through the motions of any sort of love making because I’m so hurt by his actions almost on a daily basis. He’s say he’d be better if we started having sex again, but honestly it’s just going through the motions for me anyway. His body doesn’t even really move or wok like that right now. But lately it seems to be the center of a lot of our arguments because he thinks I don’t desire him. What do I do? What have you done? No one has answers and I’m getting to the point that I don’t care anymore about anything. I’ve completely let myself go as a result of being his sole care giver. I’ve gained weight. I don’t do my nails, hair, or any kind of exercise. I’m going into a deep depression. And he keeps saying “why? It didn’t happen to you?’. We have not seen a counselor together or induvuzkly. Because well who has time between 3 different therapists (PT, OT, SPEECH) 3 times a week, doctors, and trying to keep up with my jobs I do from home plus his and my responsibilities. Is it a loss hope? Do I unpack today? Or do I run and not look back? How have you guys gotten through this? How do you still find love in your heart for someone who gets mean and isn’t the person you fell in love with?
Gina replied on Permalink
I hope you left, cause your still young you dont need too feel guilty i am going through the same thing the screaming, the abuse, name calling, i got cancer from dealing wirh this for 4 years it doesnt get better only worse
Bsrbara replied on Permalink
Oh please leave and build yourself a happy life before you marry. This comes from living a life of hell that Im trying to release myself from now. Head injury is a tough one to change so unless you are prepared to give up your happiness to make them content, get yourself out. Love and light. We know apparantly they "cant help it" but that doesnt change the reality for the carer.
Anon replied on Permalink
We're only a year out from my husband's stroke. I am so devastated and grieving all the time, my person is gone. But not gone. I get no closure because I have to watch the struggle, I have to do everything his way, and like you said there are a million appointments to deal with. I was already suicidal when this happened and to say it's gotten worse is an understatement. But I have three kids, and now with no other parent to be there, I really can't do it. So I am here solely to exist for others, but now I just don't have anyone to be there for me. I can talk about something for a bit and then he'll point at something random and not even acknowledge anything I've said. I don't have a partner anymore, I have another dependent.
As far as sex goes, I couldn't want it less. It makes me cry every time because it's almost impossible due to hemi-paralysis and size difference, and it's just another painful reminder that my person is gone.
I love him so much, it kills. But really, I love the person who's gone forever, and I want to have it be good enough, I just don't know if staying is the best choice for me because if how much emotional turmoil I'm in every single day.
All of that to say, I have no idea.
Gina replied on Permalink
I hope you are doing okay reading this i see the same pattern
Anonymous replied on Permalink
I feel so bad for you, i feel your pain. Yes you cant have a conversation when im talking he just starts talking about something random, or gets up and walks outside like your not there
Celeste replied on Permalink
I understand what you are going through. My husband was diagnosed in 2017 with low-grade glioma which was located in area of his speech and memory. I lost my stepfather in 2015, then dealing with my then fiance diagnosis and got right to work on finding him the best brain surgeon at Sloan kettering. We got married on Sep. 7th, 2017 and he had his operation on Sep. 8th, 2017...yes very next day. His surgery was successful as they were not sure if they could get all of the tumor out because the tumor had tentacles which were entangled between his healthy brain and tumor. He had a quick physical recover and went back to work in 3mos...however, he refused seeing a neuropsychologist so he has not dealt with any issues with his brain post surgery such as anger, impulsivity, short-term memory...add to that he likes to blame other people for everything especially me(he was like this before tumor). He does not write anything down, does not put items in same place where he can find them(we have a letter tray) or uses a pill box so he can recall if he took his meds, so basically im his memory. January 31, 2017 his father literally dumped my husband's uncle at our home where his uncle moved in our guestroom for a month and then our upstairs apt. November of 2017 his uncled has a quadruple bypass, so i was taking care of my husband with his daily needs and then his uncle(who moved back into our guestroom), all while trying to process the death of the fiance I knew with the husband i had to get to know. I have been pushed, had things thrown at me, accused of cheating-because i'm too damn tired for sex-my husband always asks-"What are you tired of exactly?" it drives me crazy!!! now he wants a divorce because he is no longer attracted to me and he says because I have caused him to die little by little by denying him sex. I explain to him that I do not have a sexual appetite. Doing all this while working a full-time job,( luckily for me my position was remote) it is exhausting and lets not forget the attitude that working from home "is not work". When he argues with me for mundane stuff..it seems he just wants to start a fight-it seems my needs dont matter. I went to a therapist to deal with caregiver's stress, which my husband does not believe in. so of course therapy is out...we had one couples session and that was a disaster, the therapist tried to help him understand my point of view, however all that happened as a result was him twisting the events in a way for him to make sense and blame me of course. So, I say to you and all those uninjured spouses, or significant others that are pondering what to do- do what is best for you! We matter, our feelings are real TBI is nothing to play with especially in a pandemic...You only have one life to live -how do you want to live it?
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