The Carer’s Leave Act came into force on 6 April 2024, entitling all carers in employment with a new statutory right to five days unpaid leave in order to help them to fulfil their caring duties… but this harrowing account by one of our Groundswell reporters shows that while this is a huge step in the right direction, so much more still needs to be done…

 

Plaques and Tangles…

 

I’m back in my home town, a place I haven’t lived in for over twenty years. I barely recognise the place, my friends back here are all long gone.

 

The old police station on the corner is now supported housing, the shop I used to work in has morphed into a nail bar and an old drinking haunt is an Indian takeaway, flogging naan breads, bhajis, chicken madras and baltis.

 

Nothing is as it should be… which is precisely why I came here.

 

I’ve come back here to see my mum, but the drunk, angry woman from my past is long gone too… replaced by a frail old woman in the final throws of Alzheimer’s.

 

She’s smaller than I remember, and she wears these tiny, weighted shoes to stop her falling over.

 

She has a speech impediment now, can no longer cook, wash or dress herself, and she spends her days glued to a TV with the volume set so loud it makes my ears bleed, whilst clutching a remote that no longer works because she can’t quite comprehend how to change the channel.

 

We have a fractured relationship my mum and I… and when I say fractured, I mean gone, obliterated, blown into a thousand pieces. I didn’t really know her as a child and I still don’t know her now, but to see her slowly disappear like this is absolutely devastating.

 

We sit at opposite ends of the living room, in a silence that is deafening, because one, she can no longer hold a proper conversation but mainly because two, we have no idea what to say to each other anyway.

 

I make endless cups of tea and take her to the bathroom, and twice a day the carers come to give her the medicine she needs, which has to be kept under lock and key because otherwise she’d take it all, and then when night falls, I get her undressed and put her to bed.

 

Almost immediately she gets back up and wanders around, and we repeat this process throughout the night up until around 4.00am when finally, she goes to sleep.

 

I turn on my laptop and try to do the work that’s impossible to do during the day while she’s awake, and then I count the hours until 7.00am when the carer comes and it’s time for breakfast and groundhog day again.

 

It’s only been two days and I’m ready to cry… my brother’s been doing this for 23 years.

 

I’ve come back here to give him a break, only he’s gone too now… replaced by a broken shell of a man who’s spent the last twenty years caring for a woman who never really cared for us, and who feels as though he’s been thrown under the bus, both by the care system, and also by his only sibling who he hasn’t seen in years.

 

The situation is messy and tangled and far too complicated to try and explain here but I think that it’s safe to say that my relationship with him will probably never recover.

 

He can’t understand why I appear so detached, and I don’t have it in me to go into why… but what I will say is that the mum that he saw as a kid and the mum that I saw are two completely different people. He’s younger than me and the very things he can’t remember are exactly the same things that I can’t forget.

 

I don’t want to shatter the illusion for him, and as I get ready to leave and go back home to my mum-free life, it breaks my heart to know that I’m leaving him here alone, shackled to my mum and well and truly back in the shit, but I know that if I stay it won’t be long before I’m as unstable as she was back then and the chances are that I’ll relapse.

 

Caring for my mum has cost my brother everything. His career, his hopes and dreams, any semblance of a life and very nearly his sanity. He’s absolutely broken and I’m not sure that he’ll ever be fixed.

 

Four weeks later and my mum is in a care home, because she needs more care than he can give her. My brother is a mess because he feels as though he’s failed her, and although I try to tell him that he’s done far more than most, it’s little consolation.

 

My mum doesn’t understand where she is anymore and on bad days, she thinks that she’s in prison… which is exactly how my brothers been feeling for the last 23 years.

 

Although figures vary according to source (the lowest estimate being around 2.3 million and the highest being 10.6 million), this report published by Carers UK says that there are an estimated 7.7 million carers in the UK.

 

SEVEN POINT SEVEN MILLION.

 

People whose lives we rarely get to see, whose stories we never get to hear, people whose own lives are imploding little by little, day after day, as they try to “do the right thing” by their families, because if they don’t care for them then who else will?

 

Stressed people, broken people, people who have to leave their jobs or who get fired, because their bosses don’t understand or care about the fact that they have commitments elsewhere, which are just as important as paying the bills or keeping a roof over their heads, meaning that they really shouldn’t have to choose.

 

SEVEN POINT SEVEN MILLION people like my brother.

 

This is so much more than a care crisis… it’s an absolute disgrace.