Dispatch from the care crisis
This is what the lack of care workers really means
For the first time in quite a while, I have been feeling anxious this week. At first, I wasn’t sure why, but then I thought about it and it became fairly obvious: my brain has reached its capacity for dealing with my perennial care problems. I am done.
I have been either looking for a PA, trying to get rid of a bad PA, or cobbling together cover for an absent PA since March. This is the longest period of care instability I have ever had, and it doesn’t seem to be getting better anytime soon. In fact, the general care shortage, and the knock-on effect this has on care quality, is only getting worse. Every single person I talk to who has care, works in care, or knows someone who needs care, says Brexit has taken the bottom out of the industry. What was a chronic crisis has become painfully acute. We are all, myself included, absolutely flipping terrified.
Terrified. Why? Think about what happens to me and my friends if there aren’t enough carers. The search for cover begins to take over more and more hours of your life (I am currently at this stage and it is exhausting - and that’s despite the fact I am actually lucky to have people to ask). You can’t make long term plans because you don’t know if and when you’ll have care after the next few weeks. And no matter what you do, there are the shifts that no one can cover, however willing they are to help, and so you find yourself asking your family. Do you know how it feels to negotiate a bed time with your parents so you can go to one of your best friend’s 30th birthday party? I do. This is not something I ever envisaged myself doing when I - successfully, or so I thought - moved out six years ago.
Enough of these situations leave you contemplating two related but uniquely depressing questions. When the cover runs out and my parents can no longer help, will I be forced to have random agency carers, who I don’t know and who aren’t trained (and will there even be any)? And if so, is living in my own flat - the very thing that gives me independence, and a life of my own - even sustainable long term? Before this year, I had never even asked that second question. Now, it plagues my mind in the small hours.
Of course, there is in fact no question because there is no alternative. Giving up my flat could only mean moving into residential care (and there’s none of that available, either). That would probably mean giving up everything important to me: my job, my social life and, definitely, any hopes I may have of having my own family. But it would also mean giving up all the small freedoms that nondisabled people take for granted: the choice of what to have to dinner or when to go to bed, how long to spend in the shower or what to buy in the supermarket. None of this is yet a realistic prospect - but the weight of it being any prospect at all sits on my mind in ways it never has before.
There is hope yet. I have managed - against the odds - to hire one brilliant PA this year. That triumph suggests that it is possible; that the right people are out there. I am looking into options for the future that would build in backup to my rota and lessen my reliance on my parents. I am fortunate enough to have some money to throw at the problem. It is most likely to be ok.
But more than ever before, the odds of it one day being very-much-not-ok seem to be growing. I am scared.
I didn’t intend to write this piece today. I started writing and out it came. I don’t like not having answers, sounding vulnerable. But the truth is I don’t have answers, because they are not for me to have. The care crisis has been made and remade by successive governments, who made it impossible for skilled EU care workers to enter the country, who took money from care to give to the NHS, who simply didn’t care about care. Nothing I can do - no amount of my money or energy or brain power - can balance out a problem made in Downing St and Whitehall (and Vote Leave’s fraudulent adverts). This care crisis is so much bigger than me. But suddenly, as the system finally implodes, it is small enough to have entered my front door and taken up residence in my flat, filling a space on the sofa where I wish a permanent PA was sitting.
See you next week,
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