At about 5:45am on New Year’s Eve, it occurred to me that 2024 has been the first year since I became of ‘working age’ in which I haven’t done any paid work. There are, of course, numerous reasons for this. My own health is fragile, but my wife and son’s support needs were the dominant factor in my leaving my last employment in September 2023. I can’t, don’t and won’t regret my decision to put my family first but this lightning bolt of knowledge – which came to me while I gave our boy his breakfast – did cause some introspection.
There is so much rhetoric in the media and from the UK Government demonising the ‘economically inactive’, yet I am busier now than I ever was when I worked full-time. This morning, our son woke up at 4:30am and I spent an hour in his room trying and failing to re-settle him before bowing to the inevitable and fetching him a bowl of cereal. By 9:30am, he was washed, dressed and in his wheelchair so I could push him to his respite play session. He’ll be there until 2:00pm, when I’ll wheel him home. I’m taking advantage of the shorter-than-usual session to grab a coffee and write; if home time had been the usual 4:00pm, I’d have taken the 30 minute walk home.
Once we’re indoors, I’ll help my wife manage her health and deal with our baby daughter. Because of our son’s numerous food aversions, teatime will be time-consuming. Then, the boy will need a shower and a carefully-supervised bedtime routine, which sometimes sees him drop off quickly but could also see him awake past midnight. Only when he is asleep can I contemplate doing anything else.
It is not, by any stretch, an ‘easy’ life. Nor is it a lucrative one. An unpaid carer who provides a minimum of 35 hours a week of support to a loved one (as I do) is entitled to £81.90 per week in Carer’s Allowance. Even if I were only ‘working’ a 35 hour week, the benefit paid is equivalent to £2.34 per hour. By contrast, the current National Living Wage for someone over 21 is £11.44 per hour and when I started work for Sainsbury’s as a cashier in May 1996, I was on £2.88 per hour. The reality for most carers is that they dream of only having to support their loved one for 35 hours a week and they put much more time in than that.
If DWP paid carers the National Living Wage, Carer’s Allowance would increase to at least £400.40 per week. That would still be a drop in the bucket compared to how much either local or central government would have to pay if our son were in full-time residential care. Yet the narrative is never about supporting carers (or the disabled, chronically ill or those affected by the UK’s Brexit-damaged economy). It is always about bringing down the ‘unsustainable’ sums of money spent by the Department of Work and Pensions. Of ‘getting people into work’. But, if you’re a carer and you get a part-time job you can be prosecuted for earning just £1 more than an arbitrary limit set by DWP. That’s a big part of the reason that, after 28 years in the workforce, I concentrated on my family and my studies during 2024. I wouldn’t want to get caught up in DWP’s attempts to claw back £250 million of alleged overpayments.
Somehow, I managed to complete an MA in Creative Writing recently, passing with Merit. Looking back at the year we’ve had as a family, it’s a bit hard to understand how! I suppose, if you’re passionate about something and you have the right people around you, it is possible to find the energy to get the work done. I am incredibly lucky to have a wonderful family. My wife makes a huge contribution to our day-to-day routines, despite significant difficulties and our first-born does a lot too, especially for a teenager. I also have to pay tribute (again) to my fellow students, who helped to drag me through the work.
As 2024 comes to an end, I look back on it with a degree of fondness. The team around our son is stronger than ever and he is making good progress. Our eldest daughter is doing well, our baby daughter has overcome a difficult start and is thriving and my wife is starting to see improvements in her own health. It has been a difficult year, for sure, but we have come through it as a family.
The New Year will see the teenager sit her GCSEs and our youngest celebrate her first birthday. In March, I will attend a graduation ceremony along with most of my Open University Tutor Group. I intend to write as often as the opportunity arises. I want to use this space to talk about my lived experience as an autistic person, a parent and a carer, when I can.
I don’t know that I’ll be making any New Year’s Resolutions. The only promise I intend to make is that I will do my best to look after the people I love. Giving up work was hard for me, but it is one of the most important things I’ve ever done. This has been a watershed year which will hopefully lead to a brighter future.