I AM AT MY WIT'S END

[Ditsydoris]

My partner had TBI 4 years ago. 5 months in hospital . Cannot cope with him now. Emotionless and cold. Constantly angry. Has gone back to work ( huge struggle to get medical clearance ). Has been sacked from at least 4 jobs as really wasn't ready to go back to work ( DWP said he was fine even though he didn't know what day it was ). Begged for a Social Worker but refused. Tried to get daughter into boarding school so she could be away from his anger but apparently single parents and alcoholics are more deserving of their children being given scholarships. Running out of ideas. Fed up of being shouted at and blamed. Help?

[StaceM8]

Hiya Doris, not something I've experienced I'm afraid but if you get in touch with Headway I'm sure they'll be able to give U some advice - the contact telephone No.s & email address are in the first paragraph of my profile if U want t get in touch - something I'd definitely recommend ;o)

Take care & good luck Xxx

[cat3]

My god Doris there are so many issues here. Firstly, if your husband is as unfit for work as you describe then he needs serious back up from somewhere with 'teeth'.

Please try benefitsandwork.co.uk/b-for... where you can get expert advice for a one-off fee of £20. . . . . . . well worth it for tackling the DWP.

Also, your husband needs professional help with his emotional deficit and anger. If you can persuade him to ask his GP for a referral to a Cognitive Behaviour Therapist, he will receive a full evaluation and expert help in re-connecting with his emotions and in learning to divert and control his anger.

But don't be fobbed off with anything other than a qualified CBT therapist, your doctor will know who's who in that field. But it's obviously dependant on co-operation from your husband ; I think you might have to be pretty forceful if he's reluctant to take that route. There have been male members here who have claimed that undergoing CBT saved their marriages.

I think these moves have to come first because whilst your man is stressed and angry, not to mention unfit for the work he's struggling with, it'll be too early to expect any harmony in your relationship.

He's obviously suffering too, and after 4 years it might be time to break this dreadful cycle with a serious ultimatum. It's such a cruel situation for all three of you but it can be salvaged if your husband can grasp the urgency of accepting professional help for this extremely common after-effect of brain injury, for all your sakes.

It's a rotten situation Doris ; and awful when you're so beaten down yet have to be the one to take control. I feel for you, but it's time to take a stand for your own welfare and that of your daughter.

The best of wishes, Cat x

[StaceM8 in reply to cat3]

Fantastic advice Cat & I'm glad someone could help other than the advice I gave t contact Headway direct - well done Cat. This is a classic example of why this site is so amazing for head injured people !!!

Gonna try that benefitsandwork.co.uk/b-for site myself cos I must have lost at least a couple of grand from those nasty little bs who take advantage of my disability because it's not visible

Thanx again Cat Xxx

[cat3 in reply to StaceM8]

Thanks Stace. It's a no-nonsense & very accessible site and I've heard so much praise from others who it has helped in resolving issues with benefit claims.

They're never-ending are they. . . . . . . . . . .the throw-away comments and assumptions that we're 'Obviously doing really well' or 'Looking better than I've ever seen you'. So what chance does anyone have when trying to convey the difficulties to the DWP ??

Hope you're doing ok. xx

[StaceM8 in reply to cat3]

I couldn't work it out ;o( spent about an hour on it earlier fillin in this that & the other only t find out it wasn't what I wanted ;o(

Exactly Cat !!!

& yeah apart from a little frustrated earlier I'm really well thanx - U ???

Xxx

[StaceM8 in reply to StaceM8]

I'll try again tnight when I wake up at silly O'clock - my brain's at it's best then ;o) Xxx

[mowgli123]

I am so so sorry you are experiencing all of this & I truly feel your pain. My husband has been off for 2.5 years & all of what you have written is very familiar. His BI also left him angry, frustrated, confused & certainly not the man I married. He underwent intense rehab in Ely, Cambridgeshire from Jan-May as we just couldn't cope anymore. While he was there he shut off from me quite a lot & it was very very difficult. But he learnt strategies & did a lot of CBT as Kat describes... And these people are fully qualified in BI.

With regards to going back to work, we had to go to court to prove he was unable to work. We used a charity called Disability Wessex (not sure where you live?) and they did everything for us. We won the ESA for another year when we went to court based on behaviour & continuing BI symptoms.

Look forward & keep strong. Nearly 3 years on my husband is back at uni & back in his profession of nursing. It never goes away, but it does get better. Feel free to message me if you need a bit of support/help from a WAG of BI xx

[NJH11]

Doris

Firstly, please contact Headway if you have not done so already! Where are you located? It is also possible for you and your daughter to get respite help. The sad thing is that you have to push and push for people to listen....but Headway can really help open doors for you!

Your husband should be referred for cognitive and behavioural therapy. If he is still under a neuro consultant you should ask for this referral? It is also possible for you to speak to your GP for you to have someone to talk to....and you can insist that they understand brain injury!

My husband has a TBI+ SAH in early 2011 and he is also not the man I married - his personality is very different and he has significant cognitive and behavioural issues. We have a 4 year old daughter (she was 6 months when it happened). He also has very little insight into his new self and disabilities. I have spent some time pushing for the right things to happen.....and it is still tough....but he now is scheduled to see a neuropsychologist as he is increasing aggressive in his behaviour as he realises that he is not going back to his 'old life'.

Brain injury is widely misunderstood by the 'system' but increasingly this is being changed and so keep pushing, contact Headway, and remember....you will often feel alone but you are not! There are lots of us out here that know, understand and feel for you.

Good luck

Nicola. xx

[eileenleach]

iv experienced this after my son had a tbi 6 years ago, i had to learn the changes in him on a daily basis, hes still the same now, gets angry to the extent he will kick holes in doors, call you evil names has no fear, hes always right and doesnt give a toss about anyone, then on good days hes lovely, i sent headway an email describing all these symptons and they replied telling me thats normal after a front lobal head injury, n that i shouldve been told all this, they sent me claim forms out to complain to nhs for neglect, i didnt make a complaint as without the nhs help he would av been dead that first night he had a crash, he is alive today because of them, and although its hard to go thru all this its still a small price to pay for what couldve been, they sent me a book called executive dysfuntion..read up on it it will explain to you all the symtoms you are having to live with, the told me my son shouldve had brain training when he came out of hospital, this was only made aware to me 3 years ago, but the problem now is my sons an adult and doesnt think theres anything wrong with him, he blames me or anyone else but himself...so its hard to be referred anywhere as he has to ask for help and he wont because theres nothing wrong in his eyes...

[dillyd]

Oh Doris,, what a horrible situation to be in.

The others have said it all, your husband needs some serious help, but you will have to yell loudly to get it.

As carer for my husband, his BI was 16months ago, I really know how you feel, especially with the anger & frustration.

In all this, don't forget YOURSELF!!!!. You need someone to talk to as well or your health will suffer.

Thinking of you, & hoping you get some help SOON xx

[Hidden]

My heart goes out to you. It's certainly not an easy road is it. Luckily my daughter was'nt quite as bad but still horrible to live with. I insisted she went to the doctors and I went in with her. He prescribed mild antidepressants and within 10 days of being on them she was a totally different person. Don't know if this helps in any way but I hope things soon start to calm down for you xx

[Hidden]

Way way too long and too little DWP and 'social security'. We have to beg and scrape and jump through hoops that oh don't fit us, they 'forgot' our disabilities. Can't be by accident. Then we drive ourselves into the ground (depression and anxiety) trying to 'prove' we need help.

Then after all that, if you're very lucky (or buy help like suggested above) you MIGHT get some money but not enough to live on, eat properly or have any kind of real life like sports, going out, being social and so on. Panic at every brown envelope = a bill can't pay, more interrogations and demands by DWP then punishment if all or no phone credit or forget to cancel/rearrange, oh and usually not even allowed to, must run and obey them whenever commanded to.

Delay, delay, more forms, more inquisitions,on and on and on. All the while extremely stressed with mounting debt, eating bread and beans, 5-a-day fruit/veg? They tell us to but don't provide enough money.

Way past time social security meant exactly that, it's been a lie for so long. Value of benefits gone down (halved?) in real terms in last 10 (?) years. Bills and all costs rising. They know what they're doing, a choice, in my view criminal.

The answer? Remove all the tests, bureaucracy, forms, clerks, postage and stationery, web sites, offices (most) and pay everyone a decent living minimum wage - no idea of costs but millions (billions?) wasted by them. Clean it all up, start again, make efficient and (I think) it should pay for itself. No need pay for silly expensive outside agencies - if government/state isn't capable and all the civil servants = sack them, ahh but they're all mates.

It needs to be smashed down and rebuilt from scratch, properly. Then all the clerks and paper-pushers can start actually making things (quality and safe) instead of carting them half-way round the world from China. The people in China making all the utter crap (I tested an electric little oven recently) can escape their almost slave-wages, get some autonomy and grow food and make nice things we might want: special from their culture.

GPs talk with people (keep it private, treating doctors only need to know our medical details), find out what we need and if they don't trust us with money give us vouchers to use (with choices) for help/care - if social services/healthcare can't/don't provide what help we need. But money best - we're in money system at mo.

And less stress, easy systems, human scale, simpler life = that'd suit everyone (less stress for all) and we'd all (except those greedy people profiting from all this crap) live a simpler happier life. Am I crazy? yup, probably. I truly think this is in the public interest. Silly old dreamer me. But surely a better way is possible?

[bluesgirl37]

Oh Doris, I feel for you. I came on here today just ready to post the same sort of things. I would reiterate that it's worth contacting headway and reading up on executive function. There are some helpful booklets about this. It is so hard being on the receiving end of the shouting and irritability . If someone you didn't care about was behaving like this it's hard enough but when it's a person you love. It hurts! The only other thing I would say is be kind to yourself. It's important that you have some support whatever you decide to do. My partner had a TBI more than a decade ago and often has anger issues , I often struggle with it too but the people on here are great and very supportive. I wish you all the best

[Ditsydoris]

Thank you all so much for your replies. I feel comforted that it's not just me struggling. I have been in touch with Headway. They have been fantastic. However, I get to the point that I am tired and feeling sorry for myself. I think mentally tired rather than physical. I am not married to my partner of 14 years so have had to fight to do everything. Couldn't access his bank accounts , pay his credit cards , pay his car finance, insurance or anything that needed a password. When he came out of hospital after 5 months i was given no help at all ( I'm sure like most people ) in fact I felt completely isolated . He is very aggressive to our eldest daughter and like I said in my first post I tried to get her a bursary / scholarship for a boarding school but was turned down. Still trying to get her a place and asked for a social worker but refused one. Partner is now under the Neuropsychologists at the National hospital in Queens Square, London. Have had to fight for this. I am annoyed that no one will help with the children. My eldest spent her 8th birthday in the Neuro Intensive Care Unit at St George's Tooting because the doctors told me to bring her in case he didn't wake up. Now he is home him and her fight constantly. He constantly picks on our eldest daughter and they have huge fights. Don't want her to mess up her schooling. In yr 6 she was bullied because her dad is " mental ". I can cope with feeling sorry for myself but I need to sort something out for my eldest daughter. She is the one I worry about.

[Ditsydoris in reply to Ditsydoris]

In reply to MUDDLED.

DWP ( benefits ). My partner was attacked on a Saturday night. He had been out of work for 2 months. I took a letter in to the Job Centre on the Wednesday from the hospital and they stopped his benefits that day due to " he can't seek work" . He was in the Neuro Intensive Care unit in a coma. I contacted our MP and she said that was ok ( kept her email response ). DWP made me become his appointee ( with proof from hospital ) and after 2 months I got £55.10 a week for me and 2 kids. Worked out my partner and myself had paid in 42 Years of tax between us and neither of us have ever claimed the dole. That's how it works .

[cat3]

Doris, your predicament sounds like a living nightmare. Reading your posts makes my heart race at the unfairness of everything you're going through, so God only knows how YOU are coping day in, day out.

The day of my haemorrhage I'd discovered a scam on my bank account (ongoing) which needed quick intervention but which my partner had no power to address.

Eventually, he managed to get the account closed down but hadn't the power to reinstate all my standing orders for the household bills, so threats of disconnection & loss of various insurance covers loomed but I was in 'cuckoo land' throughout.

So I appreciate what a massive challenge that was for you and, whereas things became easier for us, you are still struggling 4 years on. It's a heart-breaking story.

Forgive me if you've already tried this, but I found my local Welfare Rights Office very, very helpful & sympathetic on more than one occasion.

I'm hoping you've had helpful advice from Headway & maybe links to practical help.

Please Dora, take every bit of help that's offered and, when it isn't, shout for it. And that includes help for you, from your GP, in coping with all of this.

Cat x