I look forward to every day I spend in Westmead with C. and J., and I’m beyond exhausted every time I leave. By the time I get home I usually need an hour to not talk, not think, not do anything. The focus and patience invested suck out most of my energy.
I visit C. and J. twice per week, working on a two-month project that is about to end.
Carers, they are there every single day. A care home is a 24/7 operation. There are early morning and late night shifts; no Bank holidays. Carers are the ones doing all the hard but precarious work. Only some of it is physical: there’s personal care and meals, cleaning up and lifting. They know every single resident they work with inside out – what they like and how they talk, their habits and irks. They are the ones who notice every little change, signal or warning sign. Day in and day out, they handle every surprise dementia delivers. I can’t really imagine the levels of stress – constant, unrelenting stress – this job involves. I can’t really imagine the emotional and physical demands of being a full time carer.
Carers work on a different speed to everyone else. They have to move faster, because there is too much to do and not enough time. In an ideal world, maybe there would be twice as many carers in every care home. But we’re stuck in this world, and they zoom around the home.
When we finally get to spend some time with carers – over the course of two workshops – I realise it’s probably the first time I’ve seen them sitting for longer than two minutes. It’s a silly thing to focus on. I don’t for a second presume to know what it’s like to be a carer, but as they let us in on their day-to-day I’m thankful. That they are taking the time to meet us, hear us, and get to know the books, time that is scarce and precious; that they trusted us and helped us out; that they care for J. and C. and everyone else at Westmead; that they have the focus, energy and patience I can’t fathom; that they’ll somehow find a gap in their timetables to read the books back when we’re gone.
Google dementia and you’ll notice politicians are worried about how much it’s costing everyone, as life expectancy continues to rise; as a result the conversation is getting louder, the research funding is growing, and progress is being made. I can’t help but notice however that carers seldom get a mention; I can’t help but think the public care for carers is one of the things that needs changing too.