Exhausted, irritated, frustrated, bored, disappointed, exasperated, angry, resigned, incredulous...welcome to the world of brain injury rehab.
Each time Jake moves to a new rehab setting we are encouraged by promises of a full, well thought out rehab schedule that will support Jake to continue to move forward on his journey home. Each time I am very open and clear in expressing the need to deliver against these promises. Each time I allow excitement to creep in as I become infected by the hope and possibilities.
So why is it that each time I find myself having to step in to make these things actually happen?
Yet again, we are over a month into the placement and things aren't happening. This means that I spend hours writing emails and making calls to the various stakeholders trying to gather the information and evidence to enable me to have yet another 'tough conversation'.
The irony of course, is that I am constantly told that it is vitally important for me to retain my role as Jake's wife and not to become his carer or therapist...seems that rehab manager is OK though!
You find yourself questioning why it is so important for him to be in this residential setting; I feel fairly confident that if I was given the funding, a little guidance and a list of contacts, with the help of Headway I could create an effective rehab plan for Jake from home.
I am now laughing at the thought of all the interested parties reading this in horror! I know that making the residential rehab placement work is the better option; but really? Can you honestly tell me that this is how it's supposed to work?
Whilst I'm having this moan, I am mindful of how lucky we are; on this journey I have come across many brain injury survivors who are isolated and travelling alone without strong advocacy and support. It is a mine field littered with reactive 'if I really must' health care 'professionals', complicated funding systems, a lack of taking ownership and accountability and post code lotteries. We are lucky because we have an excellent case manager funded through the civil case, I have made a really good contact at Headway, we have wonderful, supportive families and friends and Jake has me to fight his corner each day.
So, I shall try to remember to be grateful for this, gather all of my resources and go once more unto the breach, dear friends, once more!