Angry, irritable and dependent

[Lindshh]

Hi, I’m new to this forum. My husband had a TBI following a stroke and a fall at the beginning of this year. After 5 months in hospital he’s been home for a couple of weeks and I’m struggling to cope already. We are having to employ carers to be with him when I’m at work but he is very reluctant to accept help from them, he prefers to depend on me. I went back to work on Monday but had to come home because he was kicking up a fuss and had a fall as he wouldn’t listen to the warnings of the danger he was putting himself in. This is getting worse by the day. Now the elation of coming home has worn off, he is getting very angry and irritable with me. He is in a wheelchair, unable to walk, but his lack of insight puts him at risk of harming himself by trying to walk. We have had an awful few days with him losing his temper, being very unappreciative of what me and others are doing for him. Naively I thought the darkest days when we though he might not make it were behind us, but this feels on a par with those days at the moment. I hardly missed a day visiting him in hospital and it was hard trying to juggle home, work and hospital, but this is 10 times worse. No time for myself at all except when he’s asleep and even then he has to be monitored to make sure he doesn’t try to get out of bed. Nothing anyone can do I know, but it’s helpful just to rant. I need to work, not just financially but to keep a little bit of me. Am I being selfish? We’ve been married for 16 years and I really thought we could weather any storm but this is pushing me to the limit at the moment. ☹️

[Izzy070769]

I’ve just posted a similar tale of my own so I can completely understand your frustration and upset.

We have two small children to throw into the mix so it’s been a struggle to juggle and try to minimise any effect on them, they’re probably the thing that keeps me going.

Have you a rehabilitation plan for your husband going forward? My Fiance is about to begin a 6 week intensive programme at a NHS specialist centre in Ely Cambridgeshire.

Kind regards simon

[Izzy070769]

You’re not being selfish in the slightest

[Kirk5w7]

Hi, no you are not being selfish, you have a life too.

Coping with brain injury is so difficult for everyone, I know it may seem cruel but your husband will have to learn that he has to accept help.

I was lucky I have recovered very well, but I still have many issues that are soon forgotten by the rest of the family.

Brain Injury can tend to be trivialised in the popular media today, but most survivors will tell you of their struggles to deal with their new lives.

Come back as often as you need to, persevere, ring Headway for any suggestions they may have.

I remember the chap in the bedroom next to me in rehab had to have crash mats placed all round his bed because he would try to throw himself out of it, eventually they were able to remove them and the nurse on duty by his bedside. Very often these are phases that the healing brain goes through, it depends on just where the brain is injured.

Also your husbands brain is trying to learn and rewire as a baby’s/child’s does so often will go through the tantrum stage or be just plain childish. He probably won’t be aware he is doing it.

Take care, and look after yourself.

Janet x

[SillyPhil]

I do sympathise. He has brain damage (like me) and is now a different man to the one that you married. He will probably improve, but nobody can tell how much. Headway are the experts and I strongly recommend that you liaise with them. I remember reading one of their booklets and it said that a large % of relationships do not survive brain damage. Mine didn't. But it can be done. You can get PIP for your hubby. You should be able to get the highest rate of both Care and Mobility. Your wages are not taken into consideration. That will help with paying for Carers. I think that there is more financial help. The Gov.uk site is good and Headway may be able to advise. You may be able to get Carers Allowance also, that's another £60 a week. No you are NOT being selfish. You need to retain some 'Me time', some independence. It's a really tough time for you. Your hubby is being selfish - but he can't help it and is unaware. He is in a horrible place. I was too. My accident was 20 years ago and I still struggle, my lovely 'new' Wife finds me 'challenging' and I still miss the old, 'undamaged' Me. Rant away if it helps. Offload. But please use Headway, get all the help that you can, and don't lose your own identity. I wish you all the luck in the world x

[SuePS1958]

hi there, my husband is 20yrs on from his accident and reading your post I understand where you are at. It has its tough times while you wait for them to work through the anger and frustration and start to accept the new 'norm' that life has dealt. In the meanwhile the best thing is to look after yourself as the first priority. Only by looking after yourself can you be the rock he needs to move forward. Get support for yourself in this changing world - is there a Headway locally as they provide lots of good things? the carers trust provide great things too. Does work offer counselling to help with wellbeing? Do you belong to the union at work - can they offer any support? Chat to the GP who may be able to signpost you to local support available. I guess you have been off work? If you continue off work when work have paid you 28 weeks of statutory sick pay, they issue an SSP1 form and having this you may be eligible for Contributory ESA if you have enough national insurance contributions. look after yourself and walk out of the room and shut the door when you need to. Take care of you xx

[F1951]

Hi there. I know exactly how you feel. My husband had a brain stem stroke 2yrs ago he was also in hospital for 5months.and l like yourself visited him everyday.he came home peg fed and totally paralised down the right side. Unable to walk. I hav'nt had a break apart for 1night.away in 2yrs. Hes more like my child than my husband. Don't let him play on you that's the mistake l made.you have to have a life or like me you'll crack up.l'm trying to see if he will go into respite every other weekend. See if the stroke association can help.keep your chin up and carry on working. Unfortunately lme retired. Take care.

[Mufc]

Yes it’s hard work for you but I myself had tbi 22 years ago, my husband has been with me for all that time+ careers now he is divorcing me as he says he cannot cope with my moods. As I have said to him he should of done this at the beginning not let me thing my life was good. As the person with the tbi . It will be worst for your husband in the long term if you continue. He needs to get a life that he is content with. Maybe you should encourage him to go to meetings. My husband tried to get me to go but I refused yes I would of benifited from letting steam of in meetings. That way I would of acted better around my husband and we would not be getting a divorce.

Best

Mufc