Under Pressure

It’s a truth universally acknowledged that parent carers are under pressure. While it may be acknowledged, I believe it is poorly understood. Professionals, friends and family often say that they can’t imagine how hard it must be, they are right. The only people that know are parent carers themselves and it is no one’s fault that they do not have this lived experience.

I would love to invent some kind of virtual reality experience where everyone we come into contact with has lived as a parent carer. The problem is that even if we could somehow simulate this for a weekend, they’d need years of it to truly experience the chronic and cumulative exhaustion, and disillusionment with The System. Imagine if we could get them feeling this though. No more battles to get the support we need because professionals would know how it felt, no more unrealistic therapy targets, no more medical secretaries performatively huffing their way through the appointments calendar because I have called to say I am working away and cannot make one.

I remember, shortly after my daughter had lost all her speech (due to a huge regression and constant seizures from her very rare gene alteration), that an absolutely lovely speech and language therapist talked to us about the idea of an AAC (a device on an iPad to enable the user to use symbols to communicate).
We felt quite enthusiastic about this until she breezily told us that we’d need to model ‘around 200 words’ per day in order for the learning to embed for my daughter.

We nodded along mutely while both thinking: no way.

While of course well meaning, she did not understand that sharing this insurmountable target immediately had us running in the other direction. She could not know how it felt (at the time) to be awake from 1am most days, holding my daughter up on a harness as she was having hundreds of seizures, making ketogenic meals with every ingredient weighed to the gram, administering 10 lots of medication a day, and trying to function for our other daughter.

That was aside from the emotional pain and exhaustion. She knew her stuff and was a specialist. Herin lies the problem.

Specialists, by definition, focus on one thing.

Parent carers have to focus on hundreds of things. We cannot take our eye off the ball on anything.

That’s why when a specialist, or anyone actually, requires something of us, they cannot imagine what else we have on our plates. Our plates are piled so high that everything has to be carefully stacked to fit on. They are heavy and delicate at the same time. When something drops off, the whole plate tips and wobbles as we pick it up. We do not have capacity for another huge ladle of something.

All we can do is try to educate and inform professionals and those around us. Invite people in to see our worlds either literally (come on then friend, have a morning doing caring with me), or by talking, blogging, telling our story through the media or simply telling it as it is to professionals instead of nodding along (as I did to that speech and language therapist). I have got so much better at this as I have become more experienced.

I now know it is possible to firmly but kindly say, no.