CARING : IT WILL MAKE OR BREAK YOU

I was reflecting recently on what makes a good carer, it struck me that it comes down to a willingness to
listen!
The person will tell you all you need to know, if you have ears to hear- sadly many times I have not fully heard my wife, Linda, not read the signs properly, misinterpreted the situation, always with unfortunate and sometimes painful consequences.
By profession, I trained as a Registered Nurse, yet I recorded, soon after my wife became ill with Severe ME :
The fact is I find myself in a situation where my use of a Nursing Process model has served, to my dismay and horror, to highlight how much my own thinking and practice has been locked into a set way of operating. Being a nurse, caring for my wife in our home, means I find myself in a situation, more complex than a professional work setting, where the roles and boundaries are much more explicit.
We exist on a delicate, difficult knife-edge here, of treacherous life-destroying, ravenous suffering, where every wrong move can lead to paralysis: it is an extreme and awful place to be and almost impossible for anyone to understand as an outside observer.
Sadly it is no credit to the medical profession that my wife has encountered disbelief, dismissal of her condition and crude diagnosis of depression virtually every step of the way.
Professionals are too ready to adopt an unhelpful “pull yourself together” attitude
My wife's disease is a constantly shifting changing illness; we are continually having to adapt, to survive it.
AS A CARER YOU ARE ALWAYS LEARNING, OFTEN FROM MOMENT TO MOMENT.
If you want to care you have to see the opportunities for change; you are only ever as stuck, in life, as you think you are. If things are not possible in one moment perhaps they will be in another.
Much of my learning has involved stepping outside of my comfort zone, changing old, deeply ingrained habits, the way I move, the tone of my voice, the way I have to sit down, lightly, without making any noise, learning how to hold my wife with infinite softness, the slightest pressure is too much, is in fact unimaginable pain.
Your greatest friend, I have found, is silence. In silence we touch our deepest potential and power to bring hope, to fight for change, to be present, to love, to care, to reach out, to empathise, to be calm and peaceful: the two cardinal qualities, when trying to help someone.
If your energy is distracted, rushed, frantic, agitated, hurting, depressed, angry, impatient, as it can so easily be, it is a constant struggle, I find, to stay centred. Then there is every chance your interaction could be unintentionally painful, lead inadvertently, to even worse suffering.
IT'S NOT EASY FOR YOU HAVE YOUR OWN HURTS TOO TO DEAL WITH.
Speaking as a husband, this is a place where love is required; I know that only love transcends the illness.
We have found that love gives strength in the bleakest, most barren, pain-wracked place. Love alone survives and ultimately holds us and brings healing despite the pain and grief.
My journey has certainly taken me to places, I would rather not be.
Caring: it will easily break you, if you do not grow in awareness and learn to change, on the other hand, it will take you places and teach you things that you never thought possible.
There is just no better feeling, than when you get it right!
Adapted from: "Severe ME, Notes for Carers"

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