Quick question

This questions probably more aimed at partners/loved ones/family etc

When u r there 100% of the time for ur loved one with a TBI,who's there for u?when u help them with everything they need help with who helps u?when u listen to them when they have a problem or are feeling low who listens to u?

When u encourage them with all the little goals they set and achieve,who cheers u on?when u go fetch something they want,who does that for u?when do u get ur time to just be u and relax?i feel like I don't even know who I am anymore :(

I just want to b important or appreciated for one day,I don't want to b at the bottom of the pile anymore :( im moany and tired and I'm not fun anymore,I'm not me :(

I've tried not doing all these things for one day n no one even noticed I was gone

I just want someone to hug me when I'm sad,or be proud of me because I lost another pound or notice when I'm a little quieter n ask if I'm ok!its so hard being with someone who struggles with emotions because they never notice urs

I just want to feel loved 😢

50 Replies

oldestnewest
  • Hey Gemma

    I wish I could give you the answer and tell you I know who but I don't! We're 8 years into our life with a BI (my husband) and I feel ridiculously lonely at time - you just want a cuddle or some one to hold your hand, tell you it'll all be ok! I've recently started therapy which is helping me to off load but I know this will only be short term. I don't have many friends or time to see them so hence using this forum where people do understand and searching for face to face groups in my area in the hope of making new friends! Sorry it's not the answer but here if you ever wanna off load or chat x

  • I'm so sorry u feel like this!and I think the worst part is u can never moan about it to anyone because u look or feel selfish and that's not the case,ur just exhausted and alone!every female needs a hug or validation they are pretty or wanted n when u don't get that u miss it more!i always take it to heart and feel awful in myself!people have told me over time I will b able to live with it but to me that feels like I would b someone I'm not :( I don't know,it's just so hard xxx

  • It's 12am and I'm feeling lonely too. My partner has a BI and I know I'm lucky because he is very loving. I however go to bed each night on my own and we're now more like friends. I also feel exhausted from having to organise and do all the planning. He lives in the moment. I've began to think about me and took a short city break it was really great and I'm planning to meet up with friends. I do feel lonely at nights but I am trying to do things for myself as it's the only way to keep the relationship with the person I love and his IB going.

    Hope this help your not alone

  • Hi I get that feeling its bizarre you have a person in the home that can feel like a stranger, someone that is a struggle to connect with. We are everything and do everything for them and that is exhausting. It is easy for our own identity to disappear, but like you I find this forum a welcome support. Its great to hear that you have been on a break. I am a great believer in recharging yourself in whatever way you can :-)

    Take care

  • Its one of the things we, as in my wife and I do struggle with. And it is difficult one.

  • Isn't it sad,that U come through the worst of things only to struggle with something so basic as love :(

  • For myself it's not that there isn't love per say it's that I can be to put it mildly awkward so and so. plus I seem to have lost some of my emotion intelligence in that I don't respond to some emotions, I don't get jokes at all any more.

  • That's like my partner,he never sees the signs,jokes can go over his head although he can b very witty,and when I try to flirt he either doesn't notice or things I'm being odd lol xxx

  • I assume it's not just you he's like that with?

    I don't get jokes or at least the emotion behind, saw Rob Brydon, I intellectually got the jokes but no emotional response.

    I work with young lasses and the local headway volunteers tend to be young lasses, and any mild joke flirt, silliness which pre I would of snorted at, I only get after, sometimes days after! My wife does find this frustrating as she used to be able to rapid fire jokes and what not with me.

  • Hes more "himself" around me and his family but for friends etc he can put on a show but only for so long then he has to leave because it gets tiering!hes very quick thinking and says things no one would even think of but doesn't always get it when it's the other way round!he does laugh at things but if u ask him the last time he was excited or genuinely happy he would say he can't remember xxx

  • We've been having relationship counselling with a counsellor who understands head injury it as helped but issues are not going to be solved over night and as you say are difficult ones.

  • Morning Gemma I hear what your saying it is hard when your supporting someone in such an intense way and everyone carries on with their lives and you feel like yours is on hold. Well firstly I'm sending you big hugs, secondly you have us we will listen, we will praise you and we understand you. Also you need to get involved in a group, a carers group might be good as you will have other people going through the same things and understand you, they'll probably organise different things, events etc. Also take yourself off to say the hairdressers or beauticians and have a pocket of time thats yours that will make you feel special and recharged. I also set myself a project to achieve.

    I know I've said it before but your not on your own, we are here but also there's support out there not just for your other half but for you. All you need to do is ask, and you'll be surprised. Before I linked up to my care coordinator and this forum I only had the samaritans to talk to, so this is such a comfort. But being there for other people makes me feel great and wanted xx

    Don't forget your still you, you maybe a carer but you need to take some time for yourself too xx :-) :-)

  • I think I do need more time that's just for me but I feel guilty when I take it!or even though I say I'm taking some time out I will get txts anyways asking me to do something that he could do himself no problem :( xxx

  • Its very easy to be the one that ensures everything's done, and that your the main support. But I don't think you will be doing him any favours. He has to get some independence back and take on some responsibilities, which will help you both in the long run. I am the same I have always felt guilty if I think of myself. But what we both have to do is look out for ourselves and do some things that make us feel normal for a while, or just to recharge. Without this time you could end up poorly and burnt out, and then where would you all be. I have given my partner a list of jobs to do today (cleaning) and he's done them while I've rested (I did pull muscles across my shoulder blades, so I've felt like quosi modo) lol. What we've also agreed is each night he has a check list to go round turn switches off, straighten up etc. Just little things like this takes a weight off my shoulders. You could try something like that ;-)

  • I like that idea,a list lol we did agree that as I cook the meals that he should wash up but as yet this is still to actually happen,he doesn't even rinse his own cup lol xxx

  • Sit him down hun say for his sake and yours you need him to step up and support you in the home. Say that you want to try a list with him. It will give him a purpose, and something that when he's ticked them off not only will he feel an achievement but he will be supporting you. Be honest and say doing everything is exhausting you mentally and physically, this should make him realise and want to try it xx

  • Morning,

    You're doing a great job !! It's unfortunate that you are in this situation, but definitely not alone.

    I too live in a world without hugs or appreciation....(but because my partner left me when I had illness)....but we have to look after ourselves, know that we are doing the right things and give ourselves some pats on the back and treats occasionally.

    Virtual hugs to us all !! ☺

  • I'm so sorry ur partner is no longer with u :( as much as I struggle I know I never want to leave him but it's so hard at times especially knowing this might always b the way :( do u have close friends and family? Sending u a hug straight back xxx

  • Morning Moo sending you lots of hugs, anyone in this situation dealing with so much are strong and should be proud of themselves :-)

    I hope your ok xx

  • Hi Gemma, I have just typed you a long reply, my arthritic fingers hit the wrong key and it has vanished!

    Your questions are one I have been asking for years. I am not 'me' anymore. i am just this boring person who spends her time keeping an eye on her husband to make sure he is safe. We go out and he laughs and jokes with people, what fun he is - yes he sometimes forgets things, get things wrong, but so what, it is nice chatting with him. On the other side there is ME, the one who sorts out all the muddles he makes, deals with his moods and forgetfulness (he doesn't think he needs to try when he is at home with me), the one who makes sure his clothes are clean, that his medical appointments are organised. they don't see the person he is when his mind isn't working well - like last night when he was unable to work out how to clean his teeth.

    My social life is barely there - I arrange to go out for a few hours and he will have a bad day and I have to cancel. For years I have been saying 'who cares for the carers?'. I am not me anymore, I am invisible. It was my birthday on Friday and he barely remembered, he hadn't bought me a present (but then I expected that) but said we should go shopping so I could buy something. Then he decided that he would rather go elsewhere.

    I have had enough. For nearly 30 years I have been doing this and I can't do it any longer. No one outside realises the huge mental sacrifice we have to give to enable our other half to have the best life possible. We all deserve a medal - but just recognition would be enough. But I am not holding my breath!

    Keep your chin up.

    Jan x

  • Oh Jan I feel like a selfish cow in comparison to u ☹️ uv felt like this for 30 years?im 32 n struggling but the idea of 30 years passing and me always feeling like this terrifies me ☹️

    Isn't it sad that most of the effort is made for everyone else but when u get home u get the "real" person with the straight face

    I know trying to be "the old happy him" exhausts him but wouldn't it b nice if one day he was just exhausted for u and not the other way around?

    It breaks my heart about ur birthday too!On valentines I was so excited n made his fav dinner n dessert n he ate it and then went to bed :( I'm trying so hard to make memories and take pictures but I'm trying alone!hes trying to change for him,and going to the gym now for him and everything I do is also to help him but in doing so I've been left behind :( I'm actually amazed at the positive response on here because I thought people would think I was horrible but they haven't!wots more sad is that they r living the same life :( xxx

  • You are certainly not horrible, we all feel the same. However much you try to put on a brave face, it cannot be there forever, reality soon sets in when you realise how much pressure a bi puts on the person caring for them. Counselling helps, but only temporarily and groups like Care for the Carers are good as are Headway, but ultimately you are on your own. Because I am not free to just drop things and go out, friends have moved on and I am left out. They mean well but someone who is tied down and is often depressed by their situation is no fun to go anywhere with. I can't go away as I have no one to go with, even after the huge operation involved in getting my other half looked after.

    We should start a new group called Carers United and meet up twice a year for a good knees up.

    There are lots of us in the same boat so never feel guilty about telling us your feelings. We understand completely - and sometimes it does those with the bi to read these things so that they may realise the sacrifice given by those doing the caring. Maybe the hugs we send each other is the nearest we will come to the real thing, but who knows.

    Jan x

  • I have noticed the change in me so others must b able to see it!i don't sleep great just now because I'm always thinking and over thinking!im tired,I cry for no reason (when everyone's in bed) and I very rarely have much to say or smile about

    This annoys my partner when I don't talk but sometimes it's easier because he often finds fault in the way I say or pronounce something and if I try to make a joke he will look at me like I'm stupid and that's exactly how I feel

    I would love to feel pretty like my friends do with their partners,I would love surprise flowers or a card,I would love even just a little letter telling me I am loved or wanted but I know my relationship isn't the same as others,and so I just keep pretending to everyone else that it is,because it's not something I can talk about to them or my mum :( that's the worst part,it's like a secret life,like a constant lie and painting on a happy face when I just want to cry

    We should totally start that group lol although I'm on the soft drinks (I don't drink anymore,I tend to speak my mind drunk and it's not a good thing when u live a secret life)

    However if there's food then I will b first one there lol xxx

  • Count me in for Carers United!! I'd love there to be something like this and I'm sure many others would too - maybe we should take the bull by the horns and do something xx

  • A fabulous idea but we are so spread out around the country. We'd have to have a whole weekend (wow) and get carers in for the family Count me in, have suitcase, can travel.

    Jan

  • I think one important question is: if you met your partner now, with the bi, would you still marry them? 'In sickness and in health' means one thing with physical sickness where they can talk to you, make decisions with you, understand what you both need. It is a totally different thing with a bi where the other person cannot be involved in mental communication with you. I feel really evil saying it, but if I met my husband now I would probably run a mile! We all do our very best but is it enough?

    Jan

  • I knew him years ago,as friends,and he had a partner when he was involved in his accident!a year on from the accident n they got engaged and I even went to their engagement party lol but she left him soon after!so when we met up again years later was already different from the guy I first met and was friends with in my teens

    But when we got talking he was different from who he is now

    He made effort,didn't look tiered,he got my number again n was always txtn or calling me to meet up and always came around to my house to spend time!he took me on a lovely date,held my hand,complimented me,he dressed really smart,made such an effort until we became a couple,and now all that's gone!we kiss goodbye if one of us leaves and that's it!he rarely says goodnite,just turns over and goes to sleep,and when we go on a date it's trainers and a hoodie for him now(I still make the effort but no compliments anymore) he shaves once a month if lucky and is constantly too tired!

    I don't think we will ever get married,he's made that clear that he wouldn't marry me and that's fine!but the hard part is doing everything a wife would do without the recognition xxx

  • Excuse me, no coffee in system Yet... He needs to know your not getting your support /caring you " emotion battery " charged enough in this current partnership state.. ( if that's the correct translation of your feelings??) Perhaps write it down on coloured paper / highlighted. Makes more sense with me. As simple silly as it is. Hoping I've made sense & not offended. x

  • not all people who had bleeds our looked after ,as I feel way you feel gemma84 as not had family to understand or help.more they don't an yes I am the selfish one,the one who went through 8 hours of mental;physchalabuse to changed my life,but never there's as they don't I understand my family or try too;So sometimes I I been through hell alone the person who has the bleeds an disabilities,walks,{not literally as housebound LOL } my family are sell fish an only want money an all that's best for them,this has added to assault an made me realise to survive,get help I have to do it my way,Alone again n how I wish for genuine,hugs,an words of comfort,just thought sometimes family don't support you or even look up on it as too much hassle uno

  • U have my genuine thoughts and prayers ❤️ I don't know how anyone could face this alone and so u have my admiration and respect for that xxx

  • You're doing a great job, we all feel the same at times and understand completely. It's so easy to beat yourself up. I think ultimately I have to remind myself that there's always someone worse off than me as bad as things feel. Taking an hour here or there for you is a must so make the most of it. I wish I had the answers, I don't but try to make the most of time with my lovely family and friends - couldn't cope without them. A big hug to you and take care x

  • Jan a belated happy birthday for friday, I'd have made you a cake and given you some fuss if I lived near you. We have spoken at length about how hard it is and how much we have to juggle (I know you like my way of putting it 'standing on a moving floor while juggling plates) but it is so easy to lose sight of who we are. I use to be bubbly and loved having a laugh and I feel like my sense of humour has changed. I am still me and I am going to have to fight get some sort of normality and support :-)

  • Oh wouldn't it b lovely if we could all send u a late card Jan,and a cake from angelfish,wot a lovely idea xxx

  • I shouldn't eat cake as I need to lose 1.5 stones so I can wear my clothes! Maybe we should all just 'virtually' meet up on Skpe or something for a face to face chat.

  • I think one of the best things I did was help my partner to get a PA under direct payments. He is still very creative and she helps him to run workshop and projects, something he couldn't do on his own, she also helps him get through some of my weekly task list so they assembled a Ikea wardrobe. She went on a couple of routine medical appointments. By helping to prompt his memory She is supporting both of us a life saver. She reminds him of my birthday.

    We need to find strategy that help us cope we are important. They have the BI but the impact is also on us to. Unlike being in a wheel chair people don't know and don't see. Self scarificing is a easy trap to fall into and a dangerous one. We matter just as much as the person we love and care for.

  • You definitely deserve a medal. I'm almost three and a half years as career and have had many ups and downs so far. Your message definitely resonates with me especially at the moment. I've been on mess but come off them as I want to feel human! Compared to others o. Here my husband is making an incredible recovery but yes I often ask myself who am I now?? We had words last night due to him drinking too much (he has epilepsy) - he just tells me to chill yet we suffer the consequences if he has a seizure. Think I need to find a group or someone to talk to. This site helps but I'd love to actually meet people like those on here - wish we could all get together and give each other a pat on the back. Everyone always telling me I'm doing amazing but do they really have any idea what this new life is like? I think not. I am grateful for his recovery but surely it's only human to feel down at times? I will 'keep my chin up' and get on with the day.

  • jmt2014 you are so right when you ask who you are now. It is so easy to become 'carer' rather than partner/wife/friend. Contact the nearest Headway to you and see what groups they have. Ours has a monthly coffee morning for carers where we can chat to others and find that our lives are similar and we can talk about ways to solve problems. Plus a good chat with people who REALLY understand. We have a monthly evening too, with information, cake and chat. Care for the Carers have coffee mornings here too. Yes, it would be wonderful if those of us who 'chat' on this site could get together for a bit of fun.

  • Hi I just struggle at times to accept how much our life has changed, I've finally managed to get a part time job so some me time as I see it but he even complains about the fact it will cost petrol for me to get there! I feel I can't win but need this space for me. I feel my husband is probably able to do more but am beginning to suspect he's really lacking confidence to take things further work wise. I really think he would benefit from this so will keep encouraging him. Think I will look into carers groups, for some reason I think I always felt that I didn't qualify as my husband is generally doing ok but the changes are so subtle yet actually big in my view (not interested in Birthday anniversary, kids futures, personal hygiene, etc). As others say I can't help but look at other couples with envy at times and just wish we could go back to how we were but I know that will never be 😔. Not sure if you watched the Rio Ferdinand programme on BBC recently (it's on iPlayer) but I just felt I wish they'd cover bi in this way - ok our partners didn't die but part of them did and I believe we are now dealing with 'ambiguous loss' which in my view is almost as tough. Let's try and sort coffee and cake somehow, one day maybe?? Thanks so much for your support

    Jane x

  • Hi Jane, Would it be good to get your husband involved in something to boost his confidence? Would he help out with a community group, an old people's day centre, a charity shop? There are groups too that help people back into work - I know because a friend works for one getting placements for people who had had life threatening injuries, accidents, illnesses. Phone your local job centre and find out what's available where you live. There might just be something that he would like to try.

  • Hi

    He's tried some charity work but didn't like being tied to specific day!!! He also kept looking at it from a business angle which in one way is encouraging but on the other where's his compassion to give his time to help others - and yes himself ultimately. He really needs to find something possibly a bit more challenging so thanks for your advice, will look into some of that.

    Guess I must get on with my day now as at work for 12. Not sure how to private message but if we are relatively close we might get that coffee and cake 😊 xx

  • Oh I did watch it and it was so sad :(

    But how amazing would it b if they made a brain injury one and got people talking?they done a DIY sos with a man who had a brain injury and he had to stay in a care home and I was in floods of tears!

    So many people r so unaware of the constant struggle n battle that people with BI's go through every day,and in turn their partners,family and caregivers :(

    Well done for returning to work and having that time that's urs,it's a brave step but worth it

    I for one would love a cake and coffee morning with u guys xxx

  • Yes it was sad and it made me feel bad for feeling the way I do at times but I do so miss the person my husband used to be. Don't think anyone other than us can understand this feeling. Not sure how to private message but maybe we need to see if we could arrange a meet up of some kind depending where we live??

  • Hi Gemma

    I know the feeling. I had to give up a project I had wanted to get for 2 years to help my mum out and take a sabbatical and I feel like it has zapped my identity the last 6 months. She does seem to be improving but she can be very stubborn. At times, she refuses to help herself, especially if I have encouraged her... I get the refusal all the time. 'no I'm not doing that because you told me to'. I'm just voicing things the GP advised her to do. I'm chastised for putting reminder notes up or tracking things. She thinks I am watching her so I can report back on anything she fails at so I can have her locked up in an old people's home and be rid of her. No, not what I want at all. However, if I do need to go to work away again, then I want to know she is ok and that she has someone to help her, even if that is a carer if none of the family can assist. I have grey hairs from it all.

    When you have had enough, go out and do something for yourself and have a break.

    Take care

    xxx

  • Bless u :( it must b terrible for u to have to see ur mum like that and especially at the cost of who u r :( no one would see their parent struggle and yet isn't it awful that u have no help and therefore no choice

    It can b so hard when u just want to help but u r faced with a temper or no gratitude,it almost makes u question y u bother :(

    I've found a right good moan or cry on here helps me wonders because no one judges and there's always someone worse off than urself who will still manage to smile and inspire u with their kind words xxx

  • Thanks. It's not easy. It really shocked me when some members of the family did not bother to do much to help out and left me to get on with it. The mood swings can be part of the brain injury.

    We all have our moaning sessions on headway :-)

    Sport helps such as a sport which tired you out like jogging.

    I guess the alternative is to let her try to be independent herself and have a professional back up if it gets too much for her with me back at weekends if I go off to work again, but I will worry about her all the time.

  • Hi Jayne, When I had these problems with my mother and needed to leave her, I arranged for others to be there every day so they could report to me that she was OK. Mum certainly objected to having people there but I told her that I wasn't able to clean her house for her so I was arranging for a really nice lady to come and do the hoovering then mum could just do the light work. I told her that I didn't have time to do her garden but that I had found a gardener who would pop in for an hour each week. I arranged for her hairdresser to come one day a month, her chiropodist to cut her nails one day a month. A neighbour would pop in once a week for a chat. Like this I had nearly every day covered. I didn't give mum any choice in this and she objected horribly to start but within a week or two she was enjoying the company. I would get there and it would be 'do you know what Jill (the cleaner) told me', 'the gardener is on his third wife.'... all these little bits of gossip that kept her going and peace of mind for me as they were all reporting back to me on her welfare when i couldn't be there. Worth trying!

  • Thanks for the tips Exhausted wife. She has a gardener and he brings 2 dogs with him on his rounds. He's really nice. The dogs run around in the garden when he is mowing. Customers can go and pat them.

    The telecare service I got for her for the house also does phone calls a few times a week when others are away. She just has to push the button on her bracelet and they call and if they can't get you on the phone, send a warden around.

    She really really surprised me today by going out to the local shops on her own. I had to encourage her. Seems she realized how worried I was about her becoming very clingy to the house and got worried herself about this too. Brain injury or not, a lot of elderly people get stuck in a rut and stay in for months never going out. I think it's a confidence thing. I bought her a buddi bracelet - buddi.co.uk - for outside in the garden (telecare system does not reach after 50m) or if she does go out and I can track her online using GPS. (I did this today when she was out). She has a mobile as well.

    A cleaner would be a good idea for heavier jobs.

    Where I have to go for work is not just down the road on a train, we are talking about a plane ride away or 2. Ouch.

    Thanks for your tips.

    J xxx

  • Living with a brain injury can be overwhelming, even simple things can become problematic. There's so much going on in our heads and sometimes things aren't automatic anymore so we really have to focus and make an effort, in the process other brain areas take over some of the functions lost, but that is a very long process of learning/reinforcement adaptation. Once the neural connections have been strengthened and other areas can take over some functions albeit it's never as good as the original, things don't require as much effort and fatigue is less of an issue. Nevertheless things generally do improve and you learn to live the way you are.

    We all have our own needs and you are no different, your needs are just as important and your partner knows it. I really struggle when there's lots of things trying to grab my attention, I'm easily distracted and I don't do anything well, it's better for me to focus on just one thing at a time and do it well. We have the habit of trying to do multiple tasks at once, having the TV on is no good for a conversation, things are easily missed, if you're not looking at each other how can you interpret body language? And forget about dropping a hint if his focus is elsewhere, being more forthright would be a better approach.

  • Ur so correct,the tv on,or a fone in his hand and id b aswel talking in a diff language because when I finish the question he doesn't even know I've spoke to him at all!i will call his name 3 or 4 times then he will reply snappily "what!??" So I'm unsure if he heard me all the times before or somewhere in his mind he can hear me but is busy with something else!he has a tendency to take on several jobs or thoughts at a time but only if they are to benefit him and in the end up he gets annoyed or overwhelmed!if I ask him to do just one thing for me I will end up having to do it myself!its hard to decide wots lazy and wots the BI as I'm sure at times he defo plays on it knowing I will pick up the slack xxx

  • The age we live in whilst handy is also a bit of a curse insofar as it stops us from investing in something as simple but important for healthy relations as interaction. I think after a brain injury people are especially vulnerable into falling into bad habits and obsessions with phones and other devices and they're their own worst enemy in many ways as they may lack the insight into their own behaviour. People can also find comfort in electronics as it's rewarding but doesn't place any demands on you unlike people who expect you to show an interest in them, it can be a solace, but it can also be a coping mechanism to avoid something.

    It doesn't sound like he's aware of any limitations, but if things aren't going well it may be better to find a focus and cut out any extra demands until he finds stability. This may mean giving up his former lifestyle or acknowledging that he's not coping well and needs to change.

    In many ways if he's not doing it now, it's something he needs to learn to do, this may seem silly but I think everything is learned and can be relearned even loving someone.

You may also like...