I apologise in advance for this post as I'm in need of getting my emotions off my chest and definitely don't want to offend or upset anyone.
I feel.as though I have lost myself. I am my husbands carer (no personal care) and mum to our two small children. My exhaustion levels at maintaining this level of care are now reaching what feels to me their limit and I don't know what to do to help.
My husband is a wonderful man and I love him with all my heart however the heartbreak of coming to terms with the fact that he is now a different person is overwhelming. We rarely speak he is angry a lot of the time and on the now very rare occasions that we have sex it is like having sex with a complete stranger who is quite rough with me it's like he is in a trance. One of the upsetting things is that to him everything is the same he still sees me the same as he always has yet to me everything is so different and I don't know how to deal with this as I do love him so very much and don't want to hurt or upset him.
We are 12 months in to the world of brain injury and in that time I have been in survival mode doing what needs to be done and trying my hardest to learn as much as I can to support my husband and children in this massive life change. For our children i think I have done quite well as they now seem to accept that daddy is different through lots of love and gentleness from me helping them know it's not their fault or daddies that he shouts and throws things , change of schools and play therapy. I have started seeing a counsellor however I'm finding every day so hard I feel as though I'm walking through treacle only just managing to get through each day. My wonderful husband is not aware of any of this although I have on occasion tried to talk to him about how hard I'm finding everything through no fault of his own he does not understand or have the capacity to offer any emotional support anymore.
How do I get through this time? I know it is still early days yet I'm not sure how to carry on without totally ruining myself in the process. I really do try my absolute hardest to be the person I need to be for everyone around me it's in my blood to be kind and caring but I don't know how to smile anymore.
I really don't want to anger anyone with my post so please don't think of me as a bad person for voicing my thoughts just don't know what to do anymore please be gentle with me
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jodr
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I am so pleased you have posted on here. You need somewhere to share your emotions and people on here will understand what you are going through.
I can completely understand where you are coming from and have posted on here many times when I'm struggling.
In my case it's my son who is different, he needs support rather than care as he still tires very easily, works and spends a lot of time with his children, he is no longer with their mother.
He can be very quick tempered and that can be hard for both his children and me.
He too no longer has the same emotions and empathy for others. I understand why but it doesn't make it any easier. I will always be there for him and my grandchildren but it can be hard at times.
You obviously have a great deal of love and respect for your husband and have been amazing in the way you have helped your children to understand.
My son has now realised he needs some help, would your husband accept help?
Have you read any of the Headway leaflets? They really helped me to understand.
I wish I could give you more practical advice but please share on here, people really do understand and care.
Make sure you have time for you too, I know it can all be very overwhelming.
Dear Alice thank you so much for your kind and gentle reply your huge hug is just what I needed. Most of the time I manage to keep above water and my beautiful boys keep me going..sometimes however it all becomes too much and today has been one of those days. The boys have spent the day with my mum (god bless mum's!) and I have spent the day hiding under the duvet!! I know it sounds ridiculous but that's all I've been capable of!..tomorrow is a new day and I'm sure in a stronger frame of mind.
Not seeing your own differences after BI is something that effects me. I had BI over 5 year back. To me I just needed to have physio and start remembering short term things like locking door and turn oven off. Now I feel like I’m back to normal, but my mum doesn’t agree she feels I’m not as motivated and get distracted too easy. I do go to a brain injury support group which if I’m honest I feel I just go to meet people rather than get help for BI. Today the man who set it up mentioned he feels that I will do anything I’m asked but I don’t notice when things need doing without being told. That is one of the things my mum says about me as well I just thought it was just who I am but maybe it is part of brain injury. So in 2 week the man is going to tell me 3 things he wants me to do at an allotment we go to and see if I remember to do them. Maybe your husband would benefit from joining a group like this?
Thank you for your reply and your honesty my husband lacks insight he can see the things that effect him on practical level like not being able to drive and remembering things but the emotional and cognitive changes he is not aware of at all. Everyone's kind replies have really helped me feel less alone and given me a reminder of what I need to be doing. Thank you xx
I adore my son and daughter and raised them alone, so we've always been really close and very much on the same page. But it's fortunate that they now have their own homes and families as I don't believe I could keep up the facade of being the mum I used to be.
So when they call, I can hold it together enough to assure them all's well so they don't worry about me the way they did during my illness. They know I'm a changed person, but so long as they're not actually exposed to my dreadful fatigue, short temper and low moods, they don't need to leave under a cloud and I'm not left feeling sad & guilty.
I can't imagine how I'd cope living permanently with others, as I find perfectly lovely folk really irritating after a while and when tired,don't want to see or hear anyone .
I think carers need so much more recognition for sacrificing their own needs and health for a loved one ; and SO much more practical support. I hope you're accessing all available support m'dear and taking respite whenever possible. You have my utmost respect.
Dear Cat thank you for your kind and thoughtful reply. My husband is just the same at managing short bursts of 'normalness' so his parents and everyone else have almost no idea how much he struggles and the boys and I take the brunt of those struggles. Mostof the time I can hold it together and protect our children from too much upset but for today that was definitely not the case! Thankfully my mum had the chaps today so I was able to have a day of not coping under the duvet! Tomorrow is another day though and I'm sure I will be feeling stronger. Thank you Jo xxx
I donot have a small anymore,but i understand that lost feeling,my hubby bless him is not excatly the same as he was,but i mostly have him back, our sex life is not very often either! although its not like having sex with a stranger,you have rights and feelings too,you have the right to a loving realitionship and the right to take care of yourself,rember that? if the bad days start to outweigh the good,seek more help,my dear.
Thank you for your kind reply how long ago did your hubby have his bi?
It's hard to remember that I have rights too spend all my time looking after everyone else is forget what I even like anymore! Saying that I've been so comforted by everyone's kind words it has helped thank you xx
Thank you I'll do my best 😊 that's really good he's working my hubby tried to go back in may got to 12 hrs a week and it was too much so he's been signed off again 2 weeks ago which is a relief to be honest as he was completely exhausted by it it took over everything
My hubby is just the same as you describe. I'm sure he would enjoy going to a group like this I've suggested he goes to our local headway group as they've got a woodwork workshop that he would like he says he's up for trying it i will have to be the one to organise it though!
My hunch is that (slowly) as he talks with others he should gain insight and realise that he has changed. It is hugely difficult for both parties it has literally taken me years to understand if not completely the emotional changes. My wife has had to deal with a new Husband, the core of me remains but I am quite different in many ways, and she does end up feeling like a carer than a wife at times.
Thank you for your kind and honest reply. I also feel that with time and support he will gain insight and at some stage hopefully acceptance which will include turn help too. He has just started a cognitive rehabilitation course and in Jan will be doing a return to real life course through our local brain injury team. He went to one on Monday and said it was good to meet others who shared similarities in things they struggled with. Thank you again it has helped a lot to just let it out a bit!
I'm so sorry that you are having to go tbrough all this. You sound very lonely. Sending you a big hug. You are doing tbe right thing by sharing this massive massive change in your life by going to counselling. I am in a oosition where I have thd head injury and my family arent doing the right things are 2 years. Counselling turns your world upside down for a while but shoukd get better. I feel my husband needs counselling as he needs an outlet too - as does your husband. See my post about 'counselling saying I need yo bd a different person'. He could also try 'Mindfullness' sessions which give you strategies for coping with situations that your injured brain struggles to cope with. It helps my huge anxiety problem. Speak to Headway and visit them - it is for carers too - and also your GP. I wish you and your family hope for your future.
Thank you for your thoughtful reply. I do feel very lonely but just writing on here yesterday and getting such kind response has really helped. My hubby did start doing mindfulness but has stopped so will gently remind him about it. At the moment fatigue is taking a hold on him which amplifies everything and yesterday I just found it all too much thankfully the boys were able to have a day with nana and I hid under the duvet!! feeling not quite so overwhelmed today and took the boys off for a play which was lovely it's a roller coaster ride! Thank you again
My husband had a ruptured brain aneurysm in June 2017. We are still in the very early stages, but he has gone into rehabilitation for several months.It was a huge wrench as it is 70 miles from home. After three weeks I can already see major steps forward. My husband was sent home far too early and I was then in a position that you are - trying to keep our business going, loving him more than ever, but he has changed and he also needed 24 hour care. Our daughter is grown up so I didn't have young children, I just don't know how you do that, well done.
The changes are not all bad, I have tried to accept that our life will never be the same again and now I need to adapt and love the new man in my life, which I do. I find it all goes very wrong if I sit remembering how it was, no room for that, I can only look forward now,
It sounds like your husband has been discharged without proper follow up and support. You need to see your GP and get assistance. No one can be expected to cope like this without some further support. Headway would be a good start, but he may also need some more rehabilitation. I have met a lady recently - her husband had his BI four years ago, very similar position to you with children and he has deteriorated recently. Her GP has sorted out some more care at his original rehabilitation hospital and things are already getting back on track. He is a Day Patient.
I am quite a loner and try to do everything, I learn't very early on in this that we need all the help we can get as carers but you have to ask for it. Good luck and thinking of you x
Thank you so much for your kind reply I have absolute respect for you for being so strong and level headed your husband is a very lucky man my husband has started a cognitive rehabilitation course which will hopefully be helpful even by meeting others in a similar position. Most of the time I can cope but some days like yesterday it all becomes too much. Everyone's kind replies have really helped me though and I've felt stronger again today. I'm so pleased you are seeing positive steps forward in your husbands recovery stay strong you super star xxx
We all have good and bad days, patients and carers. None of us are experts in this, it is all new and terrifying at times. I read and read on the subject and I am trying to educate myself as much as possible. There are some really good TED TALKS on YOU tube regarding brian injury and caring for the brain injured. I found these very helpful, if you get a minute (hahahahahaha) have a watch.
Hi,
What sort of care do you need to provide? Can he be left alone? Can he dress, cook, clean, look after the children for the day, socialise, work?
Can you organise daily/weekly time apart where you're both doing something that distracts you or fulfils you or just makes you laugh?
Thank you for replying he doesn't need any help with personal care and if he is alone without distraction and fatigue isn't taking over he can prepare a simple meal which is brilliant and much appreciated when he does. Socialising he finds too much same for work and looking after our children however for short bursts he spends time with them
I'm hoping that with some external support we can find our footing again writing on here has helped and everyone's thoughtful replies
Wow, very tough time for you. I had a very heavy TBI in 2014 and thought I was back to normal within 6mths. Me and the wife had troublesome, and expensive, legal challenges for 12mths after I was normal. In reality, I got closer to who I originally was after the 3yrs. Tough for you to perceive, but if your hubby can start to challenge himself mentally & physically, there is a good chance he’ll get back to normal. Good luck with it/him xx
Thank you for your thoughtful reply i have found everyone's response so helpful. Fatigue and motivation are are a challenge but he has started going for a short walk a few times a week We will learn to manage our new life just some days are harder to deal with than others yesterday was one of those! Writing on here has helped though thank you
Sending you love & hugs from a person who is 10 years into my BI. I have basically lived over the last 10 years in another world not realising what it has been like to live with me. My relationship with my partner at the time didn't last due to her lack of understanding & a willingness to discover what were my issues.
To hear all that you are doing with & for your husband needs commending as well as raising children that will be missing Dad & the person he was prior to his BI.
I know I wish i'd had the support & compassion you are showing.
The way I see all this is if the relationship is to continue there needs to be some forward planning in speaking to your husband & you need support from specialists to help him move forward.
Have you spoken to headway or the brain & spine foundation for support & advice? The brain & spine foundation have specialist nurses on their phone line that i've found very helpfull.
Tel : 0808 808 1000
This situation may need a tough yet gentle approach to help him see through the BI fog. However this for me was catastrophic in relation to the whole emotional rollercoaster. That is why you need support for this to take place.
I see 'Mindfulness' has been mentioned, this has been a life saver for me & there's no reason why the whole family can't take part in the whole mindfulness practice. It benefits all walks of life.
Please shout out to as many people as possible to support you through this as i'd hate to see such compassion fail for a loved one.
I know you mentioned sex being different & quite rough all I can say is he may need help learning to love himself & his changes in order to bring out a more loving side in relation to others.
Unfortunately the head has been treated like a 1000 piece jigsaw in it's box. It has been shaken all about but the lid needs to be opened & time taken with love for putting all the pieces back in order to create a complete picture.
Don't get me wrong I still have a few pieces missing but the last 6 to 12 months with 'Mindfulness' & support from loved ones has created a much more organised & balanced life.
I no longer live in the past thinking of how things were. I also don't look or plan too far ahead in the future but i've learnt each morning i'm blessed to awaken to a new day & I concentrate on the presant time & living this well.
I send out my heart to you all & hope with support you will gain a relationship where he understands & recognises how his head is making him feel & before the aggression, pain & frustration is openly shown he can communicate how he feels & that will just destroy any barriers or fears you are currently experiencing. X
Dear Tony thank you so much for your kind and thoughtful reply I have reread it a few times and am grateful for your understanding and listening ear.
I agree with you that support is necessary and my husband has started a cognitive rehabilitation course and in Jan is doing a return to real life course I'm also looking into a private neuropsychologist. I also think it is still earlydays and he doesn't have much insight so know I need to be patient and supportive and I am to the best of my ability then I have days like yesterday when it all becomes too much and my children go to my mums and I have a day hiding under the duvet! Silly I know but it's all I can do! Everyone's kind replies have meant a lot to me and helped enormously in not feeling quite so alone Thank you
I'm sorry to hear that your relationship broke down I find it so sad but I'm so pleased you are in a place where you can embrace the beauty around you we are so lucky to have such beauty around us we just need to take the time to see it xx
Thank you for getting this out. Feel free to let it out here anytime. We get it. It is a very tough journey to be on. Know you're not alone in feeling this way. I'm very sorry you're having to go through all of this. Since so much of the time it doesn't seem like we have any control over what is going on, it is important that you take care of your needs. The better you feel the better carer and mother you'll be capable of being. Have you talked with Headway 0808 800 2244? They are extremely helpful and caring. They should be able to offer you some ways to deal with all of this better too. I send you love, comfort and wish better days ahead for you and your family.
Thank you for your kind reply I haven't rang headway yet I don't know what to say! Sounds silly but where to start? You are absolutely right though I want to be the best mum/wife/carer I can be but by wanting that I put myself at the back of the line and end up wearing myself out! I have been so comforted by everyone's kind replies ito has really helped xx
What to say: When you call you can say "I feel as though I have lost myself. I am my husbands carer (no personal care) and mum to our two small children. My exhaustion levels at maintaining this level of care are now reaching what feels to me their limit and I don't know what to do to help." Can you help me? That should let them know where you are at and then let them help you fill in the blanks. Really is this simple. Please call them. I think it will be a great relief for you.
Thank you sometimes I just need telling I will ring them xx
Oh I think many of us know exactly how you feel. My husband will not realise that there is anything wrong with him, it is always my problem. Sometimes it is so bad that I don't know how I can go on - but then we have just been to stay with my daughter and (apart from being a bit forgetful) he managed to seem completely 'normal' for the whole time. I think sometimes people think I imagine these problems.
Have you got all the help possible? Have you spoken to 'Care for the Carers'? They have been a great help to me. Is it possible for you to get a break with the kids for a few days, just to 'be' without having any pressures. Sometimes getting away for a day or so can help enormously.
Do come on here as often as you need. It can be so helpful to realise that you are not alone. The best thing is that you love your husband so much, so many relationships break down after a bi changes one of the couple.
Very, very best of luck to you with this awful journey you are on.
Dear exhausted wife thank you for your kind reply i have the greatest respect for you. Care for the carers is on my to do list my gp also recommended getting in touch with them. Your absolutely right some times I don't know how to carry on but we do the days pass and we are still doing it. Writing here as helped a lot and the kind responses have been truly heart warming. Thank you. Yesterday I took my boys off for the day and it was lovely today I am feeling more in control of my emotions.
I just want to say I am sending you huge hugs and mountains of love.
Remember you have rights to, you are a person to.
I have to remember that we have other children and even though our son may need us more at the moment the others also need us. Some days it can feel there is just nothing more to give....... dig deep on those days even if it is under the duvet................. you deserve it. love Chris xx
Thank you Chris it's hard to give your all and remember to look after yourself too. The balancing act of sharing yourself out is not an easy one. Sending you much love xx
I am reading your post and thinking that we are in almost identical situations (although I am in Australia). We are 7 months into the journey since my husband had a heart attack which resulted in his ABI. I have 2 young boys and also have to deal with his young daughter. He is acting almost the same as your husband and I have been in tears the last 2 days as I am failing to cope properly. I have to work full time to keep us financial and my husband has returned to work 2.5 days and cannot see that he is soo tired and barely coping with work and then has no time or ability to cope with his family. You have my empathy and I hope that we can both get through to the other side - what ever that ends up looking like for each of your families!
Dear Keg90 thank you for your kind and honest reply i am so sorry to hear that you are struggling so. You are amazing to keep it all together for everyone around you I commend you. Tears are necessary and if you can make time to hide under the duvet I recommend it for a few hours we are only human and need time to regroup ourselves.
My husband also tried going back to work for 12 hours a week and just the same as you describe it took over everything he was so tired he could barely speak and was so angry and aggressive the fatigue amplified everything. My husband however couldn't see this at all. 2 weeks ago he was signed back off again, he is still recovering from work but I'm hoping with it taken away in time he will have time to focus on himself again and his recovery. Sending you the biggest hug you deserve it such a shame we live so far apart message me anytime we are in this together xxx
Big Hugs from me, it is difficult some days to deal with,but others can be good and filled with laughter. Try to find an outlet for yourself to let off steam, I go swimming or aqua classes, just half an hour doing a bit of fun exercise brightens me up to face a few more days, and strangely lifts my energy levels. You sound a lovely caring person.The people on here are nice and so are the helpline at Headway. Sometimes just writing it down helps. You take care of yourself. Mo xx
Thank you Mo you are right some days are definitely harder than others but with the wonderful support I've received in writing on here has helped massively I have started knitting just for half an hour in an evening and spending some time doing something just for me once I get over the guilt is lovely thank you :).hope you have a good day today xx
I'm new to Health Unlocked so this is my first post but I just wanted to send you a huge virtual hug. It sounds to me like you are feeling guilty about your feelings which you really shouldn't! I know that's easier said than done. You are doing great. It sounds like you love your husband very much and you are a caring and loyal wife.
My brother had a TBI 4 years ago and I know exactly what you mean about getting to know a new person. Within the first 18 months/two years he was completely different, uncontrollable, violent, angry, no empathy, inappropriate. He isn't perfect now, but he has gradually become more like the 'old' him. Hopefully this will give you some hope for the future.
Do you have a network of friends or family that you can lean on? It sounds like you have a lot on your shoulders, and you must try to take some time out for yourself. Lunch with girlfriends, get your nails done, have a massage etc. I know it's not going to fix everything but you need a break.
Sending you positive vibes and a huge hug - you are not alone.
Thank you so much for taking the time to write :).I have found everyone's response massively supportive and I hope that you will too here is a great place
My mum has been a huge help and a couple of my friends but to be honest people really don't understand so it's hard for them and for me to keep explaining that's why I find here so helpful! Making time for me is definitelynot something that comes naturally but I am trying to accept that it is important.
I'm glad to hear yourbrother has made good progresshe is lucky to have such a supportive sister I hope you have a good day today xx
You are doing so well. I am now 18 months into caring for my husband's changed needs as well as my children's daily life. It is hard and it is okay to say that. Everyone is different but I have been helped by going to Talking Therapies, it might be available where you live. TT has been the one place I can say how I am feeling without feeling guilty or that I am offending anyone. The other thing I have done is accept that he cannot participate with me socially at the moment so I arrange nights at the cinema or pub with girl friends instead. It all takes time to find the new balance in your relationship. As you rightly say it is early days. My husband is only just starting to become emotionally responsive again. Some it is will just be down to time. Good luck and hang in there x
Thank you for your kind reply i find it so helpful hearing others experiences. I'm so glad to hear that you are finding a balance and adapting. I go through phases of thinking I'm there but then other days it all feels too much! Good idea to arrange evenings with friends, my husband also is unable to do social things together and i really miss the flexibility of what we used to be able to do. I think I will organise a girly evening thank you hope you have a good day today xx
You have made the hardest step in writing down how you are feeling on here
I think most parteners of someone with a head injury have...and still do experience a lot of conflicting emotions ...
Initially you just want your husband to survive and not die .......Then when they do survive its such a relief .......but as they recover you realise that they are ‘ different ‘ .....Alive but not the same .....You feel blessed that they lived.... but guilty because you are unhappy with the person you are now living with who is not the same person that you married ..... Its a real bumpy tumbldryer of emotions ..Worry ..Relief ..worry ..guilt ...happy ..sad ..unhappy ..blessed ..cursed ..cheated
Headway is where you will learn that you are Not Alone ....Where you will learn to cope You will hear other families stories and experiences that are similar to your own
Mindfulness teaches you to basically Stop worrying ...because worrying and stressing over things that you cant do anything about is pointless and does not fix a problem that realistically cant be fixed
But it is human nature to want to fix things To make things better To get back to ‘ normal ‘ To paint on a veneer of normality ...
I can only say that experts who have studied the Brain all their working lives dont understand how it works So what chance do we have to fix it
My husbands Head Injury was a little slip on the ice in 2010 Knocked out cold Massive bleed in his brain Brain surgery Two weeks in a coma and two months of not knowing why he was not going to work every morning
We had visits from the Neuro rehab people but he had no interest in what they had to say..He was overwhelmed with tiredness / fatigue and had no short term memory He was blissfully unaware of his problems with memory ,attention span, his short temper untidiness and his differences
Headway helped us immensely then and now Do not be frightened of going to see them They have been where you are now They can help Him and they can help You
Dont expect everything to be fixed at the first meeting just go along Drink the tea ..eat the biscuits and let them support you in your journey ,
Take life slowly dont try and do more than one thing per day
Things may or may not get better but you can learn to deal with what life chucks at you because thats who you are !
Dear Katie thank you so much for your kind and thoughtful reply.
You hit the nail on the head describing the emotions of how I've been feeling and I thank you for writing it down and putting it into words. You are right i do want to fix things however I'm realistic in knowing that this is something I can't fix and the adjustment is huge!
Thank you for your honesty I hope you have a good day today xx
I am so grateful you posted this. I truly admire your attitude and I can honestly say you are wonderful!
I just joined this community at midnight tonight. I saw your post and couldn't help but read on. It applies to me as the wife of a beautiful man with a TBI. As I was reading your post I could only shake my head in agreement. I recognised almost all the situations and feelings that you go through in your relationship. I wish I could help and guide you or have answers! I wish someone could help me too.
I will share my story or our story with my husband when I have a little more time. I have been preparing for a job interview all weekend as a step to making our life a little better. I have gone to many of these. I have a job that only makes my anxiety levels go up and hasn't improved our standard of living.
You probably know and many people here know... all the worries we go through. The financial worries, the relationship issues, the maintenance of the house, diary management.... etc.
This might just be me, but that when I cannot take it I let the tears out. Then I grab a book I love or watch a film that takes to my happy place (Harry Potter) and I feel better. That's just me though. We are all different.
I just wanted you to know that I understand you. You are more amazing than you know!
Hello thank you for your lovely reply I hope your interview goes well I also have had to do a career change as my husband is no longer working and went for a training day today! It's tricky to manage with everything else and the thought of increasing my workload doesn't sound all that appealing but going to have to try and make it work somehow!!
I'm just the same it builds up and then all I can do is cry I've taken up knitting which is a nice quiet thing to do in the evenings now it's too dark to be in the garden and yes a gentle book is always nice too
Message me anytime it's always nice to speak to others in a similar boat Jo xx
I am new to this group but my suffered a TBI back in 2009 due to accident at work. Life changed so massively I still don't know where I stand in a crowd. Every persons brain injury impact is different and problems that comes with it. Everything I do I need to be sure that it won't aggravate him and his anxiety. I will be very honest, all of need a help from good clinical psychologist who has knowledge about brain injury. She saved our life, gave my husband a new life, confident and strategy to use. Also, we have this small support group who had their brain injury due to road accident and/or accident at work and we tend to exchange our feeling and information. This has supported me in many ways.
It will get better but do not just want to lie by saying it will be same as before accident. We both have learnt to do things differently than before.
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xx 
Is all lost
Wife of a meningoencephalitis survivor 2014 lonely confused and grieving ☹️
I’m feeling lost
Mourning your lost self, discovering your new self
