A fraud in a Hawaiian shirt?

This week is Carers Week which aims to highlight the challenges faced by unpaid carers across the country. Lockdown has ramped up those challenges and ended what minimal support there was. Carer Steve Palmer writes for us about the situation.

I cannot emphasise enough the importance that Hawaiian shirts have played in my life since lockdown. I’ve got a friend called Rob who reckons that men over the age of 40 shouldn’t wear T shirts with writing on. I agree but was then left in quandary as to what to wear to my summer music festival. The answer? Hawaiian shirts. They look good but don’t include a naff or annoying statement.

And then this year we got placed into lockdown. By definition, the opposite of a festival. There’s been little call for Hawaiian shirts; because it’s been very stressful. I feel like a total fraud writing this blog. Yes, I’m a carer for my son, who is 18 and has learning disabilities and challenging behaviour. But, in the same house where we both live, I’ve also been working during the pandemic.

Support required

If you’d have told me in January that I would work from home from about 20 March for an undetermined period of time, whilst my Stan’s school was closed and he couldn’t access any of his usual activities (except online) I’d have laughed long and hard at the nonsense of the notion.

But it’s come to pass. And I’ve continued working, as has my wife. Early on in the lockdown though it was clear that we needed help. Stan’s brother and his nieces have supplemented the online school lessons he has. They are a lifeline and without them I would have had to ask to go on furlough. When you’re a carer and you have an extended family that cares with you, life is easier. But we’ve heard of people living in hot flats, trying to quell the chaos that lockdown has brought about. In many ways I’m lucky.

So, am I really a carer? Well, it’s nearly 2021 and that means it’s almost time for the Census. I remember being shocked in 2011 when we filled in the Census and inputted the hours we performed caring duties; and surprised that I had any time left for sleeping or eating. It was a moment I won’t forget. As a carer you can be tethered to the person you care about and love. And that can make you resentful. And lockdown is worse. We just about cope when we go to work and we have school and activities. People talk about the ‘new normal’ but our move to that new normal has been quite painful.

Missing football

I usually have a weekly night off from being a carer by playing football and then going to the pub. Since lockdown, I’ve been doing Zoom calls with my football friends, sitting at the same desk where I work, with the threat of Stan breaking in at any moment. It’s heart-breaking to have to have the ‘mute’ button on permanently because Stan makes noises most of the time.

And yet, we carers love the people we care for. Stan and his brother are my sons and they make my heart miss a beat when I think about them. Love for your children is overwhelming; but, sadly, it can also be overwhelming to be a carer with responsibilities, resentments and reasons to apologise to colleagues for interruptions. And then I feel guilty for writing that because there are things that Stan does every day that we were told, at birth, he wouldn’t do. Being a carer can make you have a range of emotions.

So, sometimes I feel like a fraud in a flowery top. Maybe I should give myself a break. Because, as an extended family, we should all take a step back this Carers Week and, whatever happens with the pandemic, feel some pride that we have done unbelievable things; and in my case this includes wearing a Hawaiian shirt with pride.

Steve tweets as @downs_dad_uk

Steve sends a quirky Friday newsletter about learning disability and autism. If you want to subscribe email palmersteve@gmail.com