Anyone who's a carer feel stressed out.i am going to see our gp who knows us well, and I feel like I'm going to down the first five mins bursting into tears at the sheer relief someone's listening.
I feel that four years on I should be "coping'.
From a medical view, I feel I am.hubbys health is ok, he's getting stronger and I feel I've got support the past week after months of shouting very loudly and keep on at outside involvement.so that's good.
However..I feel like I've come to a crossroads.
I can cope with the day to day things I need to do with hubby.and the paper work etc.
I've just recommenced physio for him and seen physchiatrist who I feel helps immensely.
But me. I'm the problem.
Why do I feel so unloved and alone...
It's not my hubby's fault this happened and I love him to the ends of the earth and will fight for the best of everything..but when I look at myself it's like treading water.
I think the realisation of ok this is how it will be now...we've come a long way and he's done amazing but he's got no emotions left. It's very rare he will even ask how I am.
I suppose I miss the hugs, the laughs, I try and hold hands but it's like I'm just one of the care team now.
And it hurts.
I think he was so much my rock that it's knocked me.
Like I said , anything for him and it's an easy ask...fight to the end for everything.
But me..dunno where to start.
I've began going to a netball association group once a week. And I've always gone swimming.
But it's at the home.
He doesn't really want to "do"anything .
He doesn't like socialising of going out.
I accept that.
Although when we go out he loves it.
I just feel that I can't talk to anyone almost without betraying what we had.
But yes. I'm selfish and I miss the man I married.
He's still there in glimpses and thats what I live for. Those snatched brief moment are worth their weight in gold.
Kick up the arse maybe in order.im not pessimistic..and I've got my positive pants firmly hoisted up to under my armpits.... But ..it's just lonely.
Someone once said it's like you need to greive for the person/life you had do you can start afresh.... But you can't have that time because you are living it.
Sorry if I sound stupid.x
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Carer16
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You are absolutely NOT selfish. Being a carer in the short term is reasonable easy, you can see that it is going to end sometime soon. When the person you love has changed into someone else, that is a major change in your lifestyle. Yes, you love him but the person you fell in love with and lived with all this time is not completely there. The lack of empathy is so hard to deal with and they are completely incapable of understanding how you feel when you have no-one to share special moments with.
You say he enjoys it when he goes out - I think you need to arrange things and insist that he comes with you, it will be good for you both. Chose things he will enjoy. I used to get my husband out every day and it became a habit, he just got used to it and didn't object. It may have only been a coffee with friends for an hour but it was company for me and a change of scenery for him. There are lots of groups around if you look. Our go-to group was the U3A (look it up) but you may not be old enough for that. We joined walking groups, lunch groups, anything at all to improve our lifestyle and get us out and meeting others.
You need to make as much of a life for yourself as you can. Friends to talk to (especially those with partners with health problems too) are a godsend, they can understand how narrow your life becomes.
Contact Carers UK - see if there is a branch near you. We have 'Care for the Carers' here and they help so much, including arranging counselling to give you someone just for you. They gave me a fabulous weekend away with other carers - a real boost.
Sometimes you just need to scream, shout and throw things, but ultimately this is the man you love and you will do your best for him. Just make sure you don't lose YOU in the process.
Wishing you all the luck in the world. My husband died in May and how I wish I could go back and have more time with him, even with his brain injury. All the days I got frustrated and annoyed - I would take them all back if I could!
Jan thankyou for your really helpful reply. I am of course do grateful he's still here as he nearly died ,4 ,times
I've tried carers meetups but it's been difficult to get carers to cover when I wanted to go.i have a package now which enables me to go out .re getting hubby out it's not that easy as he's aggressive and will literally not get up of into wheelchair. But I'm working on striking while moods good. Put suggestion to him about Xmas shopping next week and keep telling him
He doesn't remember literally seconds later.
Not easy but then who's life is.
I'm lucky as now got a good package set up . Thankyou for replying xx
Hi there
I so so understand all you said regards grieving for the life you had , I’m only 4 weeks in but it breaks my heart every time I think about my husband before all this, like you he was my rock 💔💔
Hi I thought of you as I was writing my post..thinking how you would feel do early on in your journey and me going on about things 4 years down the line. I hope it didn't add to your stress. It does have ups and downs and even now I do it day by day. Great advice on here and just someone to talk to ....you take care xx
It is so hard some days. I too miss the man my husband was. We are lucky as we do go out but I totally understand the feelings you describe. It is like mourning someone who is still alive.
I think I have accepted the situation now and tend to try to look forward, not back. Each day has enough problems to deal with so I try not to worry too much beyond today.
I am glad that you feel you can talk about it! Most carers feel ashamed if they have negative thoughts at times, and tend to pretend everything is all right.
You are not selfish. Everybody, even carers need time to themselves, and some support. Sadly, they are often let down by the health services, who often do not tell them of what help is available.
Do not feel bad if you sometimes have negative thoughts,that is quite normal for carers.
I did feel selfish. Still do. But the alternative go just fade away and fo nothing well it's not on the agenda.,thankyou c
Hi,
Thanks for taking the time to write such a heart felt honest post.
I am also a carer for my wife having given up work 5months ago. I understand your feelings and why it feels this way. Your doing nothing wrong and its human nature to seek comfort and reassurance from our loved ones, in fact it sounds like your doing an amazing job all round.
As carers I believe we are:
- resilient
- empathetic
- supportive
- encouraging
- hard working
And I'm sure there is more, but it sounds like you have a lot to be proud of from your achievements as your husbands carer.
Social services make me have a break for at least 15hours per week from caring for my wife, so I have to pay for a carer to come twice a week. 1 day is my admin day (so much paper work, I never thought at the start of this journey would need doing and never stops) and the other day will be what ever... Visiting my parents, playing with my train set or trying to stay on top of other chores I forgot in the week due to appointments.
I also have a carer support worker through our local NHS community brain injury team, are you in contact with one? Mine was a self referal through our clinical specilist OT, but I'm not sure if every area has one.
I think I was at my lowest and just scrambling for help.sometime I could shout.....does anyone care about us carers.
How much money we save the NHS out of love?
So ..I probably home across as selfish..but I'd had enough.
No support groups specifically for brain injury... We go have headway day centre but hubby not attending at mo.
He had lost his eyesight do can't do many activities but it's the social thing.
Just getting him to interact.
So..they gave me this site...and you gave come to my support. I cannot say enough how much each reply had helped me and I'm sat here nodding my head syt replies.
Which area are you in ? Wow a community brain injury team sounds amazing. My partner TBI was 11 yrs ago a couple of sessions with neuropsychologist and that was our lot been left to it at times of stress been to see his go to talk but go was very guarded due to confidentiality brain injury is so mid understood. X
My partner functions really well but I still completely recognise what you say. It’s hard. Time out is key for me - even just watching tv on my own for an hour.
As someone who has been far too dependant on his partner since June, I think it is incredibly courageous of anyone with caring responsibilities to mention the 'elephant in the room' with regards to their own needs and issues. I am sometimes very troubled by the impact my situation has on someone who already works twelve hours a day, outside of picking up the pieces for me... but I resist the temptation dwell upon it, as it would make the issue about ME, which it isn't...I am just the cause.
Not everyone wants to bear their soul to strangers, or even to friends or family, so their frustrations are kept inside. Yes, we know that some of our erratic, unpredictable and accidentally high maintenance behaviour would test the patience of a saint, but, in my case at least, there is little I can do apart from encouraging my partner to do things that she enjoys, or finds rewarding, whenever the opportunity arises.
I'm lucky enough to have the capacity to understand that my post surgery issues and fatigue make me a pain in the backside at times. Some, of course do not have the capacity to comprehend this, which must be extraordinarily difficult for those who are caring for them.
Talk is cheap and it is far too easy to bash out 'you're doing an amazing job' on a keyboard, but the truth is, if you are dependant on someone, to a greater or lesser degree, sometimes saying that and making sure people know they are appreciated is actually all you can do.
Frustrated? Angry? Mentally and / or physically exhausted? Who wouldn't be? The people who help us, out of love, not profession, they are heroes to me, something I am happy to repeat time and again and will.
You have negative thoughts? Guess what? That makes you human.
Take care and thank you from everyone who benefits from what you and so many others do for so many of us.
Without wishing to be melodramatic, I read your post and just went and gave my partner a spontaneous hug. It won't change the world...but I couldn't think of anything else more appropriate to honour your frank and honest comment. Every word relating to you needing someone rings so true.
When you point out that nobody asks how YOU are today, all I could do was nod at the computer screen.
Recognising there are people far worse off than ourselves and the perspective it brings is very important to me, as someone who is being supported. The fact that you can maintain a focus on this from your perspective shows strength. Strength, to me, however, also includes having the courage to admit you are struggling, the courage to admit you have needs and the courage to admit that we are so often our own harshest critics.
You are in my thoughts and, I am sure in those of many other contributors and readers of this forum.
Thankyou. I did feel do low when I put this post on.... At one point I had sat and cried and thought of ringing Samaritans just to have someone to talk to.thst has passed..like you say you just pull strength from somewhere.
Never been one to be beaten... But rightly or wrongly this is how I feel.
I do now get decent carers , but this also is hard ...your home doesn't feel quite like yours.
It's a sacrifice I'm willing to make.im not wonder woman.
I hope by talking about it we can all "sit nodding at the screen"... I may be thought badly of but I had to say how I felt.xx
A bit of formation screen nodding... an unusual vision to contemplate, but spot on! I'm not too sure who would think badly of you, or what right they would have to pass such judgements, but if they're not 'in your shoes' or have been, then what they think is uninformed and unimportant.
This is so frustrating, as I typed a long reply to this earlier, but it's not here! so I must have forgotten to click on something. I can empathise with you SO much. I feel guilty complaining that he's not the man I married (he's not :() , as he is so much better than he might have been. I recognise all the things you were saying, and sometimes it is so hard to cope. I cried typing my last reply, I've got a grip now. I do often cry on my own, he doesn't see, of course. It's only been 10 months for us, as opposed to your 4 years, and I suppose I have been hoping he will improve lots more, although I feel this is as good as he gets. Our dog is my big comfort, taking him out, chatting to other dog walkers. Can I ask how you got physio and psychiatrist for him? I have asked for help, but none has been forthcoming. You said you had to shout - what did you do? Anyway, hope it helps knowing there are others out there with similar problems. All the best. xx
Physios...he was in hospital and had physio to keep his joints moving as he was bed bound.
After 19 months when he started to communicate and started eating washing himself etc..I pushed and pushed for them to get him up and walking .they wouldn't as he was a risk and the health funding wasn't there(he was in a rehab home ...i know ... Don't laugh) .two weeks after coming home I'd had physio team in and he was up and walking on a frame
.go to your go and self refer to physio .
Psychiatrist...well unfortunately ... He had a bad time after Xmas lady year and became irrational and suicidal and was admitted to hospital. For one day.
They sent him home...it's a one off.
It wasn't.
For a week I never slept.
He ended up going into respite and I rang up the hospital and asked to see the psychiatrist again.luckily I'd got his clinic number as I was sure it wasn't a one off.
But again. Gp.ask to be referred.
I hope that helps.
It's a struggle but there is help... Drop me a message if you need any more help. And thanks for replying.
Thanks.think we are at a crossroads at the moment. Tonight had been dreadful.. but he'd settled now. I'm just glad he vents at me not the carers. Please don't feel this is what it will be like for you. We are all different. I just feel I've lost my way and felt so alone...I don't want to make anyone feel like well it's only going to get worse. Hubs is very complex. Xx
Hi carer16, reading your post is like I've written it myself. I do get out and try have time for myself and we get out and do things together, he has his sense of humour still too, but the emotions are few and far between. I am talking to a therapist, but no amount of talking is going to take away the lonely feelings, thankfully, it's not a constant. When he isn't fatigued, it's great, but I really miss sharing the small things emotionally. When I get home from work, it used to be a hug and him asking me how I was, now he doesn't look up from his phone. It's been 2 half years now and I think I'm still grieving for the person and life before. X
I totally agree with all that's been said on here . No one seems to understand how difficult this is for the families of brain injury. You dont have time to grieve for lost loved ones. Your left with someone new to to care for . You should love this new someone the same as what's been lost . Losing my daughter to bran injury has almost destroyed me . But .... It cant you have to carry on you have to care for what's left . A new life evolves . Very sad but very real. I hope in time , when I gain some strength and determination I can really think about starting a support group for parents /carers of brain injury victims . Not medical or financial, just that friendly ear ,where someone will understand ,empathise and listen ...
Absolutely not selfish! It’s hard my partner acquired his tbi 11 years ago my needs were met by my two children as too busy to think of myself however now one is away at uni the other 17 building a life for themselves The lack of empathy and understanding from him is unbearable the relationship has died . So I would advise getting all the rehab you can fight for.?sorry to be negative everyone’s story is different and I wish you all the best xx
A great post; Imagine Hubby loves you as much as you love him, he knows however how diminished he now is and can't relate and associate with you the way he did, which causes loss of confidence and self denigration, bad moods and sullenness, Stick with it, try only light entertainment when viewing TV, relaxing love songs, music, if he likes this. Should he ask to go somewhere just get him ready and go!
An Ataxians reply. Perseverance, good humour and a touch of selflessness may bring back all or part of the man you married. (It's where I am right now). I wish you success, good luck, and a heap of progress
I feel for all of our situations on here as it appears we are more or less in the exactly the same boat. I'm not sure that we ever really accept what's happened. If we do, I think it is a mask. Nobody wants this new way of life as it cannot possibly be better than the old one, before we became carers. It affects absolutely every part of your existence and is the ruination of all. However, we plod on and master strength from every nook and cranny we can, soldiering on into eternity and forever more.
I do wonder where this caring stuff is going though. I attended a local carers AGM yesterday and they were removed from reality quite frankly. In fact, I have attended 3 large carers functions in the last few weeks - London, Edinburgh and in the next town on from me. When is the UK going to sit up, smell the roses and accept that it is inhumane to expect us to "soldier on", unpaid, relatively unsupported (before anyone jumps down my throat - most of us are pretty much unsupported!) and spiralling into oblivion with severely unmet needs psychologically, emotionally and very much financially.
This is a disaster waiting to turn into a mass crisis.
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