I’ve become a carer…but does anybody care?

I’ll cut to the chase. I’ve given up my job. I’ve given up the security that comes with a salary and a safe position. I’ve chosen to do this at a time when the house I rent has been put on the market by our landlord. I am not sitting on a nest egg or clutching a winning lottery ticket. I am clinging on to one thing though. Hope. Hope that by devoting my time to my family I will grant us a level of stability that will benefit us all.

About two years ago my wife fell ill. Strange headaches at first, then bouts of paralysis down her right side. Then came the seizures. Over the last two years and with close on three months in combined hospital stays she had a diagnosis. Functional Neurological Disorder. FND,three letters that have destroyed her life in a way that I could not have dreamed possible. My articulate, intelligent constantly busy wife was working nights, running the community centre, volunteering as a school governer and dealing with two children. She is now unable to work and is confined to a wheelchair on the worst days and crutches on the best. She has a permanent weakness down her right side and is terrified that she will have a seizure when she goes out. Not an irrational fear unfortunately as it has happened several times. She now stays at home and tries to avoid the world.

With the diagnosis came the neurologists verdict. You’re obviously repressing a deep trauma that is affecting your nervous system on a functional level. Go and see a psychiatrist  and it will work itself out. As I’m sure anyone who has waited for a mental health referral knows the wait time is horrendous. Added to the lack of physio arranged to help her learn to walk again and we had the recipe for a steady spiral of decline that has left my wife in the worst state of her life. Severely depressed and severely disabled. When your wife looks at you as she is once again recovering from a bout of seizures and says  “This isn’t a life I don’t want to carry on” and all you can do is hold her, you lose a little bit of yourself in the frustration of being unable to help the love of your life.

That is why I have given up my job. For two years and with fantastic support from my colleagues and manager I have struggled to balance being a carer and a dad and the breadwinner. I accept now that my future lies on a different path and I hope that by sharing some of my feelings and frustrations I can A) help myself and B) help anyone going on a similar journey.

I don’t know how often I’ll get to post. I’m writing this now as my wife is back in hospital and I’m furious over the lack of understanding of her condition and the terrible standard of care. That’s a topic for the next post though.  Many thanks.