Well-Informed Mindfulness: Must We Not All Be Carers?
In a cycle of guilt and pain, by sharing the burden in order to help others cope or even progress, can we afford to care just a little bit more?
It hurts that I’d called my brother for days on end and he refused to talk to me, and not knowing why — hurts that I’ve had to accept that he is abnormal and at times doesn’t always respond to genuine helping hands. But I’ve presumed, it’s due to him being diagnosed with paranoid schizophrenia and psychosis.
Capitalist culture determines that we look after Number One. We must be wealthy, even healthy, to help others, but nobody needs dependents because their dependency seems an easy option. But shouldn’t we be doing loved ones who are labeled ill a favor and however possible help them achieve independence?
My brother lives in supported secure housing. He was admitted into care from an early age, which was a shock to the immediate family because we just didn’t see it coming. I was elsewhere, juggling my own aspirations, never expecting to do too much for anyone else. I wasn’t ready, but it wasn’t about me. In his eyes it was always about him.
Looking for answers
I’d wrongly assumed that family members close to him would support him adequately, helping him to overcome the situation somehow… I hoped. It was about staying positive, but assumptions and hope don’t necessarily fix all. Truth be known, I was in denial, unconvinced I could assist any further, even though I always felt a touch guilty.
I’d mistakenly left it to my aging father and sisters, a cousin, and other institutions to sort it all out. The family hadn’t agreed on decisive action based on any evidence, apart from the suggestion to move him closer to family members, which has helped, but it’s just one step. It’s a shame that after over 10 years of his early life in care, only now I come to reflect on what and why.
I can’t believe the lack of progression, and decisively want to help him realize independence, something he’d never experienced. He’s still being assessed on occasion because he can’t maintain self-control, having been deemed a danger to himself, and possibly the world, beyond supervision. He knows no other adult life apart from that within confines, a life dependent on medication.
Now deeper involved, I’ve learned a whole lot about the labyrinth this is — that perhaps his judgment and ability to deal with his predicament is being inhibited by the same meds (with names I can’t pronounce) that were prescribed by professionals to help.
I’d noticed that around the time medication was given, he told me not to trust him with a new smartphone, even when this meant having better contact with and support from his family. Further, he hasn’t had many friends in the time he’s been there since like in a prison, residents come and go.
Medication and misdiagnosis
These meds appear to temporarily suppress any issues and let them fester, issues to do with everyday survival that he should be facing up to like we all must. It occurred to me that to soothe people with drugs, effectively ignoring the problems, can’t be the way to progress — without targets, reflection or being challenged, without being encouraged to face our demons which don’t have to be too scary.
His key worker and behavioral psychologist don’t deny not having all the answers, and don’t disagree that our sibling may need a little more intervention. Since my raising questions, diabolically the psychologist has in fact disclosed doubts about the original diagnosis, which means my brother could be on the wrong medication.
And now, consensually, these so-called professionals are considering reducing his meds over time. This is progress. And so is the fact that we all agree that we have allowed him to socially isolate himself — that he needs encouraging to do things in the community as part of social groups, and that he would benefit from living amongst residents he has more in common with.
Now I see that if we encourage people to go inward, then that’s where they’ll go.
Nobody needs the extra responsibility, as we’re too busy trying to keep up with the Joneses, and don’t like to admit we are vulnerable when taking on too much while struggling. How will he… how will we overcome? If we virtually hold hands, pay a bit more attention, make an occasional sacrificial act of selflessness perhaps. Now I feel empowered and believe any hope we have can turn into much more.
We may all have in common some capacity to do something for others, especially a blood relative. Working as a unit, we don’t have to feel alone, isolated, or forgotten. Right now I’m curious about the possibilities, about how much impact we can make when we share the burden.
Mindfulness is only productive when well-informed, focused and relatively selfless. I would never force a meat-eater to go vegetarian, but I may encourage them to eat healthily. Nor would I stop a smoker who chooses to smoke because they may have their reason to erode themselves, a reason they are not inclined to speak out about. But If I intervene and lose, then at least I tried to do the right thing.
We’d all appreciated an unselfish random act of kindness every now and then I’m sure, and it does happen, so why not build on something that gives humans humanity, like a wave of kindness that could feed a better future for all?
My brother deserves a chance to get better and I could be the difference, so I’ll be there for him whenever possible, doing my bit, able to empathize to some degree, and not just at Christmas.
Despite the constraints of everyday life, with my family’s support, I must stay positive and work towards the best of what could be a few imperfect options. And although I don’t classify myself as a carer, it appears that by getting involved and being mindful, with making a little extra effort, I may well help tip the scales in our favor.
Shaun Clarke writes whenever possible, including poetry and fiction. Raised in Leeds, he was a rapper within a group, and solo, and for a while ran Breakers Unify, involving hip hop elements, including breakdance as a healthy alternative to crime, violence, boredom and drugs. He started out writing film scripts and plays, then progressed to short stories, and wrote a two-part novel. Now a community activist through writing, he writes articles for the Bristol Cable, and has compiled an urban poetry anthology, Lyrically Justified, with UK contributors from different racial and cultural backgrounds.