How care informs love on a daily basis
There are many ways to show love. Proper care planning is one of them
One of the purest and most attractive ways to love someone is to care about them. And that love? It’s gathered up by understanding and respecting the little details.
Care is like the tiles in love’s mosaic. It is the collected moments, thoughts and rituals we share with another person.
A kind word here, a gesture there. A coffee given without request. A chore completed without fanfare. The person surprising you with a lift after the scary doctor’s appointment. Walking past the dog bowl to see it’s already full. Feeling your own emotional bowl is rarely empty through the consistent actions of another.
Care is an unseen kindness. We notice care most is when it is absent.
You notice the nurse not on the ward when someone needs toileting assistance. You notice that Nan is currently engaged in a staring competition with a hated blueberry muffin, unable to enjoy morning tea in her long-term care placement. Or when Nan says she has not been to the garden for at least a week because she’s missed strength training at home for week or two.
Whatever level of care Nan needs, when it’s gone, you can see the waves of frustration visibility emanating from her.
This is the absence of care.
Imagine if Nan didn’t have you to help get her point across. Or conversely, if Nan lost the ability to speak entirely. What if Nan was never one to complain and kept smiling and nodding but secretly lamenting the difference between what she received and who she was?
What would her care look like then?
Defining care before it’s needed
“You deserve the right to consent to care. You also deserve the right to refuse it.”
It sounds like a simple statement, yet it gets all kinds of people adjusting themselves in their chairs. It is the moment where people start to listen to the Exsitu presentation. It’s the one at the dinner party that gets the ears pricking of usually apathetic Gen X and Y friends who have usually swipe away such conversations for “when I’m old”.
Welcome to the light bulb moment. We’re Australian. We love defining a concept’s merit by our ability to refuse something. And in relation to healthcare, disability or end-of-life, that’s not a bad thing.
Choice is defined (whether we like to admit it or not) by what we agree to and refuse in equal measure. We need to be brave enough to turn up the volume on that fact.
We forget sometimes that what we know as practitioners is different to the general public.
Joe and Johanna Public assume care will continue to come. Care will be appropriate. It will help. That’s how medicine and nursing works. Good people doing the right thing and keep on trucking and trying the next thing. They continue to deliver care.
Yet, practitioners know care may continue to the personal detriment of the person receiving it. That there is such a thing as too much care. Or that care requires personal insight and customisation to remain a good fit. That dignity, risk and care all need to learn their dance steps before the run of the big show.
Any one of us who has had to attend a conflicted, powerless and in real-time grieving family knows the taut string care pulls between dignity and risk. We’ve seen the grief-stricken faces that cannot take Dad home to die. We know the agonised looks machinery receives from grown children as it aids the breathing of the forevermore silent Mum.
How many times did we offer cold comfort and lukewarm tea to the partner who stood outside in the hall – or outside the building – as they stood powerless to speak for the person they knew so well before marriage equality was reached?
Or that remnants of all kinds of exclusion still create problems, trauma and tension even today?
Oh yes, we know the strains care without articulation can bring.
Care is the broken pieces we stick together. They are the intended moments grouted together with the ones that just happen.
They are the moments carved in amongst the weeds and weaves of our somewhat fractured relationship with health and dying.
The moments that bob in amongst regret when care planning was deemed irrelevant because a person appeared to be in good health. Mired by indecision and drowned in information, care discussions are put off and off until it can be put off no more.
Plagued by personal issues and relationship concerns, cultural sensitivities and assumptions, care begs to shaped in the image of the individual. Only often to find itself closely resembling guesstimates, family trauma and a cautious system. It is the perfect storm floating in the sea of guilt, regret and more than a little feeling that we all wish the horse had not well and truly bolted.
Caring for the carers, too
Our role is not to make choices for people about their care on their behalf. But we can help highlight that love is the colour palette for care’s mosaic.
If we love ourselves as professional caring people, surely, we will not want to continue a cycle where we bear witness to continued trauma? Or we feel as though we’re wedged between what we can systemically achieve versus what the individual needs?
That we remain giving beyond what is practical and reasonable while missing opportunities to reduce suffering is not a future anyone wants.
To see families struggle with a lack of choice through an absence of documentation and record is incredibly difficult and frustrating.
Yet, we can change things. We can normalise articulating care needs and progressing people forward with the dialogue, confidence and ability to have the conversations they need.
Even questions that seem every day to us can open up the minds of the general public:
· How many side effects are you OK with experiencing?
· What does a good pain-management day look like for you?
· Would you accept all forms of life-saving intervention?
· How many of your senses would you be OK to lose?
· How stubborn and set in your ways would you like to continue to be?
· What does a good day look like to you?
We’re already the caring profession. How can we get people to care before we need to?
If you are in Australia and looking for a way to help define your care as an individual or as a care provider with the person-centred care model at your heart, please contact us now.