Probably the hardest thing…

I’m certain there’s an argument / discussion / debate to be had about ranking the various aspects and experiences of what it is to be a Carer.

But perhaps impulsively, I would wager right now, that the constant adapting to rhythms and tempos is probably the hardest thing to deal with.

There is no constancy, consistency, regularity conducive to a sense of mental stability and well-being. The needs and demands are sporadic throughout the day, week and month – and you have to change and adapt constantly. For anything substantial that you want to do for yourself, requiring sustained effort, concentration, or attention – oblitterated and decimated instantly by the staccato-esque distractions required of you.

I suppose having a musician’s background of sorts – I should be able to understsand, rudimentarily at least, the music being played. But it’s a Jazz man’s improvisatory skills one probably needs to thrive on this dynamic. And I was only ever classically trained – which is more my style: generally on the beat, perfectionist in nature, following strict instructions with a very specific interpretation, and little leeway for doing it your own way, in your own style, for how it suits you…

Is it a paradox to say that the only consistency, is the inconsistency? Fuck knows.


For all the platitudes you receive for “How noble it is a thing you’re doing”, “I couldn’t do it myself,” “It’s a really great thing for you to do” – it’s a small consolation for the profound isolation, and quite often, the overwhelmingly negative experience it is to be a Carer – non-professional and unpaid.

Perhaps there is some pride to be taken for the fact that you’re probably the only person in the world who can do this job for that specific person. No one else, right now, knows the person you’re caring for the way you do – their nuances, their rhythms, the way they like to do things. They’re also used to, and comfortable with the way you care for them – arguably a little bit too comfortable at times.

To replace you, would take years of building a new relationship, a new way of being, developing a new level of comfort arising from an arduous journey of mutual compromise without time-scale.

You are irreplaceable. You can take pride in that and all you do.

But you are also the only one in the world who knows it.


It just takes one person…

Having someone truly understand your circumstances and your situation, openly, honestly, and without judgement – it really makes all the difference. A parent, a relative, a friend – it could be anyone.

More often than not, these are the people that have let us down the most. In place of where we need and expect those closest to us to understand, there’s an agenda for how we should be, and how we should think, what we’re supposed to accept – mostly from a place of love and care.

But it’s not what we want. It’s not what we need.

Having someone real, in person, truly and deeply understanding your experience and perspective of life woud really make all the difference.

As a full-time Carer, it’s something that I feel is lacking profoundly in my life right now. I’m certain though, were there even some remote semblance of a network (a family network, an old friends network, a past employer’s network, even a community network), I would do my best to be that person for someone else.

When you’re disconnected for so long, it’s difficult to create or re-create those connections. A lot of hard work is involved, and I’m not sure I have the energy to spare for it.