I suspect - even if you feel guilty about it - that's how many business owners reacted to the Liberal Democrats' proposition of a Carers' Leave Bill - swiftly followed by relief as you realised which Party had put it forward, and how unlikely they were to ever be elected. Then a niggle of anxiety; what if whoever does get in nicks the idea, because they think it'll make them popular with those in the electorate you secretly think are "lazy scroungers who just want an excuse not to work."
I know it's how an awful lot of people do think - because I'm a carer for my wife. I went through the Covid-19 pandemic as a shielding carer to someone whose primary disability classes her as clinically extremely vulnerable to any kind of respiratory infection. I had to see, every time I noticed a newspaper, or logged on to social media, exactly how the other 90% of society felt, when they couldn't get clout for clapping for those paid the minimum wage or above for their care work.
I don't qualify for Carers' Allowance - many spousal and kinship carers don't, because what we do is background. It's part of our everyday. It doesn't fit neatly into provable expenditure of 35 specific hours every single week.
And even if it did? If the government agreed that I was providing 35hrs of care for my wife, at a level which made it okay for them to release "tax payers' money" to me? I'd get a grand total of £81.90 a week. For 35hrs - that's a grand total of £2.34 an hour.
That's barely a quarter of the National Minimum Wage.
"Yeah, but what do you actually do, that a normal spouse doesn't?!"
Okay, let's break it down:
1. My wife has autism, which means she isn't easily able to identify what suitable clothing for particular weather is. As she is vulnerable to chest infections because of cerebral palsy, I have to make sure she knows when to wear a sweater, a coat, etc. If she hasn't been fully awake when I've had to leave the house, that means remembering I will need to text her if I know she's planning on going out.
2. Her cerebral palsy leaves her very low in energy, and with very stiff muscles upon waking - she often won't be awake and able to actually move, or even talk, much before 10am, without a lot of pre-planning, reminders from me of what time she actually needs to go to bed, and a conscious awareness on my part that I need to handle almost all of the morning chores, so she can focus on getting ready.
3. She also has ADHD, which causes time-blindness; she can tell the time, she just isn't readily able to process what the time it happens to be means about where she should be in her journey to get ready and leave the house, in order to be somewhere else by a specific time. I typically have to balance 'prompting' her for where she needs to be in the process, with not p*ssing her off by seeming to be "nagging." She's also not really able to factor in travel time as a concept (If teleportation could hurry up and be an affordable reality, she'd be fine!)
4. Her autism, and the fact that her CP makes physical activity challenging, can lead to her not really considering how often clothes need to be washed - that means I need to be on top of noticing how often she's worn something; as I'm registered blind, and losing what's left of my sight, this is becoming more and more challenging. The fact that we currently can neither afford to remodel the kitchen to accommodate a washing machine, nor replace our tumble dryer, which gave up the ghost a couple of months ago, means balancing the time-and-labour demands of handwashing with the availability of good weather for drying (our house is a narrow, small-roomed terrace...space to set up clothes horses and dehumidifiers is not readily available...) is a whole separate challenge. (Laundrettes are ridiculous in their insistence of specific coinage only, and expensive to boot. Plus, neither of us drive, so we're limited in how much stuff we can get back and forth each time.)
5. Her autism means she can't really handle the planning of an entire week's shopping, and her cerebral palsy means that carrying shopping back from town (10mins away) takes an exceptional toll on her - so I'm responsible for the shopping. I would prefer to do it online, as that's easier for me to check ingredients, but it's not always the most affordable option, and money is a very primary consideration for us. (We are no strangers to the 'yellow sticker specials!') Again; neither of us drive, taxis are expensive - even a simple shop can take almost an hour by the time I've walked there and back, and got everything we need.
6. Like many people with cerebral palsy, she has digestive issues. She really struggles to process vegetables, and meat that isn't heavily processed. In contrast, I can't tolerate a lot of processed foods, or a high level of carbohydrate. If we're eating cooked meat like chicken or steak, I will need to cut it into small pieces for her - especially with red meat, she doesn't have the manual grip strength to cut it easily herself. This, of course, means I have to be home at the time she needs to eat; she has a tendency, if I'm not there, or not hungry, to just "grab a snack", rather than actually eating a proper meal, which ends up with her energy crashing further, because of calorie deficit. Planning and preparing meals that play nicely with her digestive issues from CP, her sensory issues from autism, and her allergies (onion family, and garlic), makes things a lot more difficult than "grab a ready meal and sling it in the oven for 45mins while you go off and do something else."
7. Her autism means she struggles to manage strong emotion - at times, it can feel as though I do nothing else all day except tell her to calm down, stop shouting, etc...only to be yelled at that she's not shouting...
8. Executive dysfunction, which is part of both her autism and ADHD, means she really struggles with self-direction, and can easily just spend a whole day scrolling social media, "waiting for the dopamine to actually get up and do things", because she's aware there are things she needs to do, but she just can't figure out how to get started on them. Equally, she is unable to plan for longer-term goals; if someone else (me) provides a plan, she can follow it (with some prompting to hack the executive dysfunction), but she can't set up that plan herself. I'm...not the most tolerant person when it comes to explaining how to do things to people (which is why I never went into teaching!), and will feel frustrated, resentful, and generally just strop off and do it myself. Obviously, that then means I'm not available to attend to other things that I also need to be responsible for.
9. There will be some days when, because of the level of pain and stiffness she's in from her cerebral palsy, I literally cannot leave her. She would be at risk of not being able to get to the bathroom in time, would be unable to get up to get herself water, or food. Those days, I just have to write off anything that involves me being gone for more than an hour, at most, and be there to help her sit up, get to her feet, get her food and fluids, etc. Fortunately, these days are every few months, rather than several times a week, but, as she ages, we have no idea if that may change.
11. I have to be aware of how much energy she has expended, and more or less force her to plan her days for a maximum of 4 "visible slots", plus what we refer to as "the two invisible slots" for her, of getting washed and dressed, and ensuring she eats - 'slots' in our language, are 'space for energy-draining activity which requires conscious effort' - I can manage up to 7 'slots' a day, and, for me, getting washed and dressed, and sorting food, mostly actually are invisible - as in, they're not "the slots I pretend aren't slots, because however I feel I have to do them", they're just background noise. Things I can do without really thinking about it. That's not the case for my wife.
It also took a chunk of time and discussion to actually identify how many "slots" she genuinely has available. Her 4-slot days are her good days. (In contrast, my bad days are 3-4 slot days).
This whole process includes physically reminding her to rest, being available for the bad days, when she'd planned 4 slots, but can only manage 2, but the other 2 slots are things that need to be done that day.
Eleven different aspects - and that's just the things I can put into words, and pin down to specifics.
Do I spend 3hrs 20mins a week - 45mins a day - across all of these things? (35hrs/11 things = 3.18hrs per thing, per week, round it up to 3hrs 20mins.) The doing of them, the awareness of them, the being available to do them if needed? Probably. Can I indicate, prove, and justify that on a piece of paper that's being reviewed by people who already think I'm trying to scam them, who believe I "just don't want to work", who think I'm "lazy and entitled"? Not so much.
Yeah, but you're doing alright on benefits - people like you are clearing £2,000 a month! I wish I had that money for doing nothing!
My wife and I are both currently going through hell trying to even qualify for the disability enhancement to Universal Credit (which would bring £617 a month, to support two adults up to a whopping £983 a month. As I was fortunate enough to be left £80k of my late father's life insurance 11yrs ago - a half share - and used that to buy our house outright, we receive no other "benefits", beyond, currently, Council Tax support - if we had been approved for the disability enhancement, I could afford to pay the flippin' council tax without any 'support'!) That's only just over half what I'd take home on my own in a minimum wage job each month. But I can't even apply for most minimum wage jobs that I can get to, because they all insist on "full UK driving licence and access to own transport" - something that, being blind, I'm not legally allowed to have. The competition for higher-paid jobs I'm experienced and qualified for - and which are generally more amenable to people working from home - is insane. Without the social contacts that I don't have the time to make, as even when I'm not working, I'm doing practically a full time job as a carer, I haven't got a hope of even making it to interview for those jobs.
You can't claim both Universal Credit and Carers' Allowance, because the Carers' Allowance either means you're "saying you're not available for full time work", or, if you get the disability premium, being a carer means you're lying about being disabled - despite the fact that 27% of UK carers have also disclosed a disability; like my wife and I, it is not uncommon for disabled partners to also be each others' carers.
To qualify for Carers' Allowance, even before we get into 'the person you're caring for needs to qualify in their own right for Attendance Allowance', you have to prove 35hrs a week of care.
That's the minimum you would be doing in a full-time job (40hrs over 5 days, with an hour a day for lunch.) You wouldn't be allowed to do a second full-time job (most places I've worked are deeply suspicious of someone having a second part-time job...)
Then, in my case, I'm also managing my own disability - that probably covers about 15hrs a week, because most of the impact is when I'm working, but, if I have a sudden deterioration, that's an entire day wiped out at the hospital, in winter I lose everything past 4pm because of night-blindness, in heavy rain or bright sunlight, everything takes twice as long because those are weather conditions in which I really struggle to actually see even my hand in front of my face, and then there's the time I need to take out after I've done extensive text-based work (usually about 30mins for every 1.5hrs of work; imagining a mythical 35hrs a week, that works out at about 11.5hrs lost to "trying to get my vision back from literally greyed out and nauseating pain." Add in the lags, the time lost to night-and-weather-related blindness, and even without a hospital visit, 15hrs a week sounds about right. Jack it up to 22-23hrs if I have to go to the hospital as well.
The reason I'm working on getting self-employment up and running is it's the only way I am ever going to manage what would amount to two and half full time jobs - because my wife's disabilities mean she is literally unable to manage work at all, I have to support both of us. That means I have to work full time.
My care commitments are also full time, even if I can't prove them.
Managing my own disability is part-time.
Caring for my wife, and managing my own disability covers 50hrs a week. If I got the minimum wage in recognition for that, I'd be earning £2,288 a month, and taking home £1,916.
And I'm doing it for less than half that, whilst hearing that I'm getting £500 a week "off the social"?!
See?! It's just not viable to employ carers!
But carers, as you've just seen from the extensive breakdown I've provided, need to be employed - 'benefits' (I prefer that the term 'welfare support' be used, as it's less loaded towards the idea that someone is getting a "perk" for "nothing") simply doesn't pay enough to actually live in the UK in 2024.
Carers also bring a lot to the workplace, even if we often can't back it up with fancy pieces of paper and references.
. Carers are used to handling crises - they're a routine part of our life. Often, the crises carers deal with are actually life-threatening, rather than the manufactured "A customer is mad!" or "We're going to miss a deadline!" - this means we can be exceptionally calm at the time a cool head and direction is both most needed, and most lacking from the rest of the team.
. Carers juggle multiple, competing priorities without even noticing we're doing anything exceptional. That's a major part of work, and something it's very hard to train someone to tolerate - why wouldn't you take on the person who's already very well-versed in it?
. Carers have ninja-level skills when it comes to navigating bureaucracy. We have to - no one else is going to stand up for us, or do the work for us. It's all always been on us to get up and get what we need. We don't think twice about it, and we're not intimidated by job titles. Our whole lives have been filling in forms, so the thing everyone else is stressing about, because "it's going to take all day!!!", a carer will probably knock off in a couple of hours.
. Carers are used to identifying priorities, even when everything actually is urgent. Again, we do this on a daily basis. We're also very used to picking up 'someone else's' responsibilities, without whinging about how "it's not my job!"
. Carers have what I call "steel-toe-capped compassion" - we care, deeply, but we will not hesitate to kick multiple backsides into gear if that's what's needed. We're very fluent in the distinction between "I can't" and "I don't want to." In short, if you need someone who's got their colleagues' backs, but will also kick their arses if needed - hire (and ideally promote, and pay appropriately!) a carer.
. A manager's 'difficult conversation' is a carer's breakfast table chit-chat. I get very, very bored doing mandatory "challenging conversation training" - because I've always just had to have those conversations. I was figuring them out at 10yrs old while I was trying to deal with a severely mentally ill mother, and an exhausted father. That basically means I have twenty-eight years of experience in "having difficult conversations." That's more than most CEOs I've worked with!
If you've got this far, and feel you might like to explore how to effectively hire, support, and reward someone with caring responsibilities in your workplace, drop us a line - theproductivepessimist@yahoo.com. (We're on a short break until June 18th, but we're taking bookings from the 18th onwards.)
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