That’s how I describe the nightmare, when her agony and all her symptoms are firing out of control and you feel so helpless.
Which is most of the time.
Most of the time she is unable to tolerate anything.
Most of the time her broken body is screaming on the edge of existence.
Most of the time her experience is one of sheer, brutal torture.
So, how does one respond?
As I see and experience it, there’s at least four possibilities.
Being pissed off because there’s so much else that you would rather be doing, consider yourself entitled to be doing. After all, this is your life too, why should you give it all up for her? If only she would pull herself together, isn’t that what sick people should be made to do? How unfair it is to be stuck in the house all day with someone who can’t do anything, go anywhere, who’s tormented by every sound and movement. Best leave her to get on with it by herself, there’s nothing anyone can do anyway to make it better.
Two is ANGER:
Who does she think she is? How can she be so selfish and self-absorbed? How can she be this ill and never get better? Isn’t she trying hard enough? What did I do to deserve this? I am out of my depth here. She really winds me up, the way she reacts just to me being around. She brings out the worst in me. She’s screaming, I am shouting, she can’t cope, well neither can I. I’ve just about had enough of this. I’m off, I’m withdrawing, I’m lashing back.
Three is SORROW:
The losses are massive, they mount up over weeks, months years, so what do they do over decades? They become too huge to deal with, too entrenched to sometimes even recognise.
They can easily spill over into a "poor me" attitude that still somehow blames the person for everything that is gone, the broken hopes and dreams, the ordinary life that might have been. The invisibility of the carer experience reinforces the losses and the poverty of experience.
But how do you express the infinite sorrow without being drowned in never ending tears and grief? Unexpressed sorrow can lead to despair and ineffectiveness in your role.
Any of the above three positions lead ultimately to estrangement, lack of connection and cold, authoritarian postures and behaviours that limit the relationship and the effectiveness of caring interactions.
All these and there are many more, are reactive responses to stressful situations.
We continually work things out together. We know very well the useless, stuck games people play, the ever present danger, in any moment, of playing the victim or being the persecutor. I know this both from personal and professional experience.
Partnership is the intention to enhance each other’s life as much as possible, given the ongoing severity of illness and the limitations set by it.
Its aim is to find peaceful flowing moments of connection that reach beyond or through the illness, to touch each other’s life with goodness.
Based on respect and relationship, partnership is a mutually rewarding experience, because it is concerned not with exerting power over the other, but with fostering the enormous power available within, to help each other cope, to get through each moment and more than this, to flow together and grow as people.
Partnership relies on dialogue, communication, listening, hearing and seeing the other person Its aim is to reach a consensus, to understand, as much as possible, the impossibly complex issues.
Partnership is an iron-clad, rock solid determination to work things out together.
Partnership is an ongoing commitment to never walk away, to never neglect the other, to never give up, to never stop learning, to grow together.
Partnership is an open heart.
Partnership is mutual compassion, sensitivity, valuing and respect.
Partnership is openness, acceptance, warmth, focus and attention.
Partnership, above all is a choice. It is your choice to provide care for the one you love, even if, sometimes, it might feel more of an obligation, an expectation, a chore and a heartache.
These issues have to be negotiated together, for partnership is only ever possible, in all my experience, through understanding and a willingness to keep caring.
It is a living, dynamic relationship, a dance.
Partnership is moving through all moments, happy and painful, seeking the best one to engage in the right way.
Partnership is to touch a joy that is much, much bigger than any limitation, circumstance or deprivation. The last thirty years of us finding a way through together, has taught me that.
Greg and Linda Crowhurst (c) 2023


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