Being a carer is something that I’ve written about before, about how it can be a much broader role than is first perceived, especially when we focus only on a professional home-help for the disabled or elderly. Modern life likes things appropriately pigeon-holed and boxed but such attitudes rarely do justice to the reality nor anyone any favours. We all should be carers really, people who care, every day of our lives. But there is more to ‘caring’ then just its root meaning.
Although I am not claiming that parenting is simple, when it comes to ‘caring’ I would suggest that the parenting role is the simplest. It’s the most easily defined and recognisable. You are meant to care for your children, you could say that it’s almost an intuitive response. You have the support of individuals and organisations. You have specific goals and timeframes.
When it comes to adult ‘caring’ then things get more complicated. A lot more complicated.
Why is that?
The person who is receiving the care is not a dependent minor. They may well have known a long life of maturity, independence and responsibility before suddenly finding themselves in need of care. Having to hand over their life along with any remaining dignity doesn’t put them in an easy position. Without even thinking of the physical changes, any change of health has huge emotional and mental consequences. And not just for the sufferer themselves. The carer is often a family member who has likewise been precipitated just as suddenly into this new arrangement. In fact, the carer may have previously been the dependent party in the relationship. What happens when your full-time breadwinner is too ill to work? Or is the sole driver in the family?
Just as the ill person needs to adjust so to does the carer. And that adjustment will need to be done together, there needs to be dialogue, meaningful communication. The process can even be similar to grieving. And you have to accept that both of you will be seeing, feeling and dealing with the situation differently.
It’s not easy living with a serious and or long-term health condition. I know that. But the ill person usually is best placed to receive appropriate support and treatment. What is on offer for the carer? Precious little. In the best scenario, they will have the full support of the person they are caring for but maybe not.
Carers have to walk a fine line, carving out a new role for themselves even if the relationship is falling apart around them for whatever reasons. They may be taking on all the responsibility, the duties that come with sickness whilst the person who is actually ill is practically delusional as to the reality or seriousness of their illness. And what point does a carer become a nagger, a paranoid observer or a call-the-doctor-right-now hysteric? Usually at a different point to the person they are caring for.
It needs open and frank communication between both parties, that’s for sure. The ill need to accept their limitations and know when and how to ask for the help to need. Because that carer needs all the help they can get in knowing what to do.
Mental health makes the challenge even harder.
What do you do when your loved one refuses to seek treatment or acknowledge their decreasing state of health? How do you balance motivating them yet not overburdening either them or yourself? Do you take responsibility for getting every single pill into them, for them getting to every single appointment? Do you remain on high alert even when they’re swearing that they’re fine?
It’s hard to find a balance as a carer. You may have lost your best friend, your own support system. You are lost and alone in a place that has no name, no map, no solutions. You may or may not have the cooperation of the person you are caring for.
But the worst is the endless, draining, exhausting level of responsibility and pressure that you have to live with day in, day out. Sometimes it feels like someone else’s life is in your hands, everything you do, say or even think seems to be a determiner in their state of health, maybe even their survival. You find yourself taking on more and more, tasks that you never used to have to do yourself, tasks that you maybe didn’t even know needed doing. There is not a moment off-duty, you are permanently tuned in to their every symptom, reaction, feeling, whim, want, need, you name it. Even when you’re apart. Sometimes being apart is worse, the fear, the dread, it eats away at you.
And then there’s the emotions that goes with that endless, draining, exhausting rollercoaster. Sometimes bitterness seeps in as you wonder whether they couldn’t just make more of an effort, whether life really needs to be this way, a bitterness tinged with then quickly replaced by guilt and shame. The loneliness that sets in as your loved one withdraws from the world then from you. The pain and confusion of reactions, words and behaviours that would have once been incredibly alien. A fear for the present never mind the future, the future is too far away and unfathomable as you subconsciously scrutinise everything, analysing and recording, noting each subtle change, holding onto each one like time-lapse cloud patterns. The thousand and one worries that are yours and yours alone as seemingly the only responsible adult around, the financial, the administrative, the domestic, everything is on your shoulders, it is your burden to manage.
The pressure is overwhelming and ceaseless. There is no hope. Just endless cycles where good days see m far and few between.
But who cares for the carers?
While most of us wouldn’t be ‘glad’ that our loved one is ill, we do ‘gladly’ take on the challenge. Why? Because we care. We do everything and more because we care.
But our resources sadly are limited. We are human. Love doesn’t make us perfect. Or bestow some super power or immortality or whatever else is needed to care day in, day out, year after year.
That’s a scary and humbling and shaming thing to admit.
But carers can’t go on forever without rest or support. Especially when that’s not the only thing that they themselves are facing, their health may break or they may have other responsibilities and commitments to juggle with or some other crisis to deal with.
Who cares for the carers?
What help and support is given to them? Where can they turn when they have reached the thousandth breaking point and just don’t know how much longer or further they can go on? Who will listen to them? Who will relieve them of their burdens? Who will give them a supporting hand?
Carers do an awful lot, normally behind the scenes. They are stage managers who also run the lighting and sound whilst building all the scenery, rehearsing the actors and choreographing the dancers, learning understudy, drumming up support and backing and leading the marketing campaign. They do everything. Usually single-handedly. It’s fine for a while and the show goes on. But for how long?
Please remember the carers in your midst, appreciate them. Spoil them every so often, make sure that they have an evening off or a listening ear. And if you ever need someone to care for you, man up and work with them. Trust them and reassure them.
Please care for the carers. We all owe them such a lot.