My husband (now 44) was in a RTA two and a half years ago and got a mild brain injury. It was diagnosed at the time as Post Concussion Syndrome and we were told he would get better. After two years we have concluded he won’t. He has, amongst other things, issues with short term memory, loud noises, bright lights, maintaining concentration, depression and fatigue. He is not so severe that he has stopped functioning altogether. He is managing, with support from his colleagues to work a reduced contract of 28 hours a week. He has just been accepted for a programme of support from the local CFS clinic as he presents as typical of CFS triggered by the brain injury. I wasn’t working when the crash happened, although I was preparing to go back to work. I have two children going through GCSEs and A Levels.
My husband gets up four days a week gets a lift to work, works til 3.30 and then I pick him up (a 2 hour round trip for me) as he is not fit to drive after working. He comes home, goes to bed, gets up for tea, does gentle activity such as emptying the bins (never the washing up!) and at 8pm goes to bed. At the weekend he can do one activity per day and then he rests. His activities never involved the children. His experience of CFS is typical as everything fatigues him.
I do everything, including being both mum and dad to the kids. I can only guess what it is like to be him. He used to be very active and social, now work is his only social and intellectual activity.
Whilst I am doing everything at home and for the kids and him and also picking him up from work I can’t seem to find anytime for myself. I am struggling to envisage carrying on like this for the next 15 years. I am finding it increasingly difficult to accept that whilst everything I do supports him and his mental well being by enabling him to stay in work I am doing so at the expense of myself. He is at exhaustion point and can’t function beyond going to work, he can’t even do that without me helping him. He won’t consider taking a break from work to look after his health because he is worried that ’ missing the social and intellectual contact will be bad for his mental health’ and ‘he won’t know what to do with himself.’ I do understand this but he seems to think it’s ok for me to be missing all this and spending all my time and energies on keeping the family going. I am very lonely and no longer have him to go out in the evenings with. We don’t visit family together and rarely do anything with him and the kids. In a nutshell, I am fed up.