I'm caring for my mum and silently furious at what my life has become

Telegraph

6 hours ago

There was a morning, a few months ago, when I found myself doing something that, to me, seemed completely reasonable: I hid under my bed.
I must say, the experience wasn't that pleasant; it was quite dusty under there, and there was a smell of damp rubber from several old wetsuits. Still, I persevered with the discomfort, and a while later, my partner found me.
'Why are you under the bed?' he asked.
I craned my neck. What a stupid question. 'I'm hiding,' I whispered.
'From what?' How did he not know? 'From… my life?'
The moment – which I suppose might be described as a cry for help? A mini breakdown? – was sparked by being caught firmly in the midlife 'jam', and essentially reaching breaking point.
As I tearfully explained (once he had joined me under the bed), I am in my mid-forties with a teenage daughter to look after. I work most days. I have poor health. Anxiety bubbles constantly. There is little downtime, no 'me' time.
On top of this, for the past few years I have been an unpaid carer to my brilliant and feisty 80-year-old mum who has the pits of all diseases: dementia. It is this – needing to support my mum, who lives an hour's drive away, once, ideally twice, a week – that has tipped me over the edge.
'The demands on me,' I said, '... are too much. How am I meant to do all this? How is anyone?' He had no answer.
Looking after Mum and Dad
I am not alone in being an unpaid carer (if that's what I am). According to the charity Carents, which offers practical tips to those looking after elderly relatives, around four million of us now have some sort of responsibility for our parents.
This figure is only going to grow as the number of Britain's oldies rises. By 2030, more than a million people in the UK will have dementia, according to the Office for National Statistics. What's more, between the two decades of 2002 and 2024, the number of centenarians in England and Wales doubled. By 2072, more than a quarter of the population will be aged 65 and over. This – charities warn – will inevitably boost the numbers of those with long-term health conditions, frailty and social care needs.
I hate to point out the obvious, but given the state of social care in Broken Britain, this means more and more families (and mainly women) will be left to pick up the pieces.
And that prospect is beyond alarming. Carers' Week, an annual campaign held every June, highlights the inequalities faced by unpaid carers, including a greater risk of poverty, social isolation and poor mental and physical health. For caring for an elderly parent while trying to work, bring up your children, pay the bills, feed the pets and not let the house become even more of a mess, all without losing your own mind, is – dare I say it – near impossible.
Coping mechanisms
In my case, I do everything I can to mitigate extra pressure. Should a friend text to ask when I am next free for dinner, I will archive their message, not reply, feel like a total scumbag, and simply pretend my phone broke when I next bump into them.
All extraneous activities – drinking wine – have fallen by the wayside. Life has been whittled down to the bare bones of work and Mum, yet it still basically resembles a slow-motion car crash. The weird thing is, in my case anyway, I don't even feel like a carer, just a pretty incompetent daughter trying to not be completely selfish for once in my life.
I am not even anywhere near my mum's main support; that role mainly falls to my brilliant stepdad. But caring for someone with dementia cannot be left to one person. They would murder them before they could say, 'Are you going anywhere nice on holiday?' (for the 72nd time that day). So I am someone who provides company, and often food, and the odd bit of cover for when my stepdad needs to go out (Mum can't be left alone). Mostly my 'care' involves driving over, having lunch, walking the dog, watching Pointless and slagging off the Government over tea and biscuits. Not too hard, you might think. Wait until it's your turn.
Sometimes I have to work when I'm over there, so I take my laptop and field phone calls from their open-plan kitchen with its bad phone reception as their TV burbles in the background, which makes me want to shoot myself from stress. I lie in bed after those days and think to myself: is this normal? I have no idea any more.
Other times, I arrive and shamelessly fall asleep on their sofa (told you I was incompetent). But I just can't help it. I am so exhausted that if I don't, I will get a raging headache to the point I won't be able to open my eyes and drive home. Is that caring, when you drive to your mum's house, sleep on the sofa and let her feed you biscuits when you wake up? No idea.
Either way, the physical toll of juggling work and caring (even if it is sleeping) is completely overwhelming, though, luckily my teenager doesn't seem to notice that I have abandoned her. She has TikTok and K-pop. Thank you Asia.
Losing Mum bit by bit
But the stress is no doubt exacerbated by the emotional turmoil of seeing my mum like this. For bit by bit I am losing her, and that causes me – at times – terrible distress.
Often I simply dread getting in the car to see her, because… she's not my old mum. But I am still so grateful that she is still here.
She knows who I am, but every visit there are mild changes and I never know quite what to expect.
She may have a good day, laugh at my jokes (Mum's back!) but then she may become agitated and repetitive, and it will dawn on me that she's gone again. Spoiler alert: dementia never gets any better.
And of course, this barbaric disease is not simply memory loss. It can also bring crippling anxiety (who wouldn't be anxious if they sensed they were losing their mind?) and depression. It can insert old memories into your brain, leaving reality confusing and distorted.
It can bring gloom, cynicism, anger, and I think a total sense of worthlessness.
The more intimate I've become with the disease, the more I've been horrified by its cruelty. How can it steal someone's brain away, make them mistrust all their loved ones, destroy their family in its wake? It is so brilliantly effective, so evil and destructive, I darkly joke that it must have been invented by the Russians. Novichok and dementia: what Putin wouldn't give.
A cost to the economy
Of course, friends who haven't given up on me offer advice. They might suggest employing a carer (they cost £35 an hour), or putting Mum in a home (she is not that bad yet).
They might suggest I don't see her as much, or quit work. To be fair, this is what sensible carers do. According to Carents, in 2021/2022, 400,000 carers quit their jobs, at a cost of billions to the economy (no one's quite managed to count the exact figure). Another study shows that UK carers exit their jobs more than elsewhere in Europe (is anyone surprised?).
But I don't want to quit work, and my mum wouldn't want me to either. So I am stuck, but also selfishly, silently furious at what my life has become. After all, I did spend years juggling a young child and work. I thought I'd left those days behind.
Basically, as dark as it is, there is no way around this situation other than through it. And that means, as far as I can tell, being resilient, understanding that this is where I am at with life, getting perspective (others are doing far more caring than me) and sometimes taking a break from it all, so I can pretend none of it is real.
In recent months, with a dawning reality that this may last for years, I have forced myself to have more 'me' time – rejoining my old orchestra and going swimming weekly. Exercise is key to sanity.
I don't know what will happen to my wonderful mum. Will she one day need a full-time care home, which will see my stepdad having to sell their house to pay for it, thanks to Labour scrapping the social care cap. Will she be gone tomorrow? I often joke that dementia will kill one of us – it just might be me first.
All I can say to other carers is the obvious; that despite the messages from well-meaning charities and some councils that we are not 'on our own,' they are barefaced liars. Of course we are on our own.
All we can do is hang in there. And failing that, hide under the bed. Even if just for a day or two.
An overlooked crisis
According to Dr Jackie Gray, co-founder of Carents, the rise of unpaid sandwich carers has become an 'overlooked crisis' in the UK.
'Millions of people are caring for frail elderly parents, and many don't even identify as carers,' she tells the Telegraph.
'This is because they consider caring for their old folk a natural, loving thing to do. But this can mean they are excluded from help, and we know the pressure can have a negative impact on their physical, mental and financial wellbeing.'
A 2024 study by the charity showed that 55 per cent of people who care for parents have neglected their own health and well-being and 57 per cent have experienced financial challenges.
'There is a total lack of clear and robust evidence about how best to support people caring for older populations,' she adds. 'But supporting carers for older populations should be a priority for the UK.'